The CFRI CF Community Voices Podcast: Recent Episodes
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CFRI's CF Community Voices is a video podcast series created by and for the cystic fibrosis community.
Despite the higher rates of incontinence among people with CF - due to coughing, which puts strain on one's pelvic floor muscles - stigma and embarrassment keep many people from seeking treatment. In this podcast, Georgia Brown, MLA, an adult living with CF, shares her personal journey with incontinence, opening up about her initial challenges in speaking with providers, how she eventually found effective treatment, and the significant improvement in her quality of life after seeking medical support. Georgia is joined by Dr. Abigail Shatkin-Margolis, Associate Professor of Obstetrics & Gynecology in the Division of Urogynecology & Minimally Invasive Gynecologic Surgery at the University of California San Francisco. Dr. Shatkin-Margolis discusses what incontinence is, its various forms, its specific impact on people with CF, and the range of treatment options available.
Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.
Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.
Despite the higher rates of incontinence among people with CF - due to coughing, which puts strain on one's pelvic floor muscles - stigma and embarrassment keep many people from seeking treatment. In this podcast, Georgia Brown, MLA, an adult living with CF, shares her personal journey with incontinence, opening up about her initial challenges in speaking with providers, how she eventually found effective treatment, and the significant improvement in her quality of life after seeking medical support. Georgia is joined by Dr. Abigail Shatkin-Margolis, Associate Professor of Obstetrics & Gynecology in the Division of Urogynecology & Minimally Invasive Gynecologic Surgery at the University of California San Francisco. Dr. Shatkin-Margolis discusses what incontinence is, its various forms, its specific impact on people with CF, and the range of treatment options available.
Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.
Funding for CF Community Voices 2025 has been provided by Viatris and Vertex Pharmaceuticals.
April is National Donate Life Month, a time to raise awareness about the importance of organ donation. In this podcast, adults with CF, Elyse Elconin-Goldberg, Missy Peterson, and Willem Wery, reflect on their experiences preparing for, undergoing, and recovering from double lung transplants. With unique journeys, Elyse, Missy, and Willem discuss the joys and challenges of receiving "the gift of breath." They share how they prepared through exercise, therapy, and family support, and offer insights for others considering a transplant or becoming an organ donor. To learn more, visit www.organdonor.gov.
Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...
Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.
Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.
April is National Donate Life Month, a time to raise awareness about the importance of organ donation. In this podcast, adults with CF, Elyse Elconin-Goldberg, Missy Peterson, and Willem Wery, reflect on their experiences preparing for, undergoing, and recovering from double lung transplants. With unique journeys, Elyse, Missy, and Willem discuss the joys and challenges of receiving "the gift of breath." They share how they prepared through exercise, therapy, and family support, and offer insights for others considering a transplant or becoming an organ donor. To learn more, visit www.organdonor.gov.
Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...
Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.
Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.
In this podcast, Dr. Jessa E. Miller—Rhinology & Skull Base Surgery Fellow at UCLA—provides background on the anatomy and function of paranasal sinuses, and the impact that ineffective CFTR protein development has on a person with cystic fibrosis’s (CF) ability to properly rid the body’s respiratory system of mucus and trapped debris. Dr. Miller touches on the common experience of Chronic Rhinosinusitis (CRS) among people with CF, with an emphasis on diagnostic criteria, impacts to proper olfactory functioning, and treatment options. Dr. Miller also expertly explains the Unified Airway Theory, which underscores the relationship between the sinuses and lungs, illuminating how pulmonary exacerbations are often seen in conjunction with CRS.
Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...
Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.
Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.
In this podcast, Dr. Jessa E. Miller—Rhinology & Skull Base Surgery Fellow at UCLA—provides background on the anatomy and function of paranasal sinuses, and the impact that ineffective CFTR protein development has on a person with cystic fibrosis’s (CF) ability to properly rid the body’s respiratory system of mucus and trapped debris. Dr. Miller touches on the common experience of Chronic Rhinosinusitis (CRS) among people with CF, with an emphasis on diagnostic criteria, impacts to proper olfactory functioning, and treatment options. Dr. Miller also expertly explains the Unified Airway Theory, which underscores the relationship between the sinuses and lungs, illuminating how pulmonary exacerbations are often seen in conjunction with CRS.
Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do...
Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.
Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.
In this podcast, Dr. Chelsea Lau, a Fellow Physician in Hematology and Oncology at Northwestern Memorial Hospital, explores the link between cystic fibrosis (CF) and various types of cancer. Dr. Lau provides insights into how cancer develops in the general population and highlights the unique cancer risks for people with CF as well as CF carriers. She discusses the connection between CF and cancers such as intestinal, pancreatic, liver, cervical, and lung cancers, highlighting the latest data on these relationships. The episode concludes by covering screening recommendations and key considerations for managing cancer in the CF community. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do... Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.
In this podcast, Dr. Chelsea Lau, a Fellow Physician in Hematology and Oncology at Northwestern Memorial Hospital, explores the link between cystic fibrosis (CF) and various types of cancer. Dr. Lau provides insights into how cancer develops in the general population and highlights the unique cancer risks for people with CF as well as CF carriers. She discusses the connection between CF and cancers such as intestinal, pancreatic, liver, cervical, and lung cancers, highlighting the latest data on these relationships. The episode concludes by covering screening recommendations and key considerations for managing cancer in the CF community. Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/do... Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email. Funding for CF Community Voices 2025 has been provided to date by Viatris and Vertex Pharmaceuticals.
In this brief video you will hear from several cystic fibrosis researchers whose work has been funded in part by the Cystic Fibrosis Research Institute. Hear about the innovative research they are pursuing, including phage therapy, stem cell research and gene editing. CFRI-funded research continues to advance our mission to find new therapies - and ultimately a cure - for cystic fibrosis.
Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation
Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.
Funding for CF Community Voices 2025 has been provided to date by Viatris.
In this brief video you will hear from several cystic fibrosis researchers whose work has been funded in part by the Cystic Fibrosis Research Institute. Hear about the innovative research they are pursuing, including phage therapy, stem cell research and gene editing. CFRI-funded research continues to advance our mission to find new therapies - and ultimately a cure - for cystic fibrosis.
Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation
Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.
Funding for CF Community Voices 2025 has been provided to date by Viatris.
In this podcast, Crystal Boeckel, an adult living with cystic fibrosis (CF), reflects on her experiences being pregnant and giving birth to her two sons, the first time off and the second time on a CFTR modulator therapy. Crystal shares the health challenges she faced in the latter half of both her pregnancies with cholestasis—a condition that occurs when bile flow from the liver to the small intestine is reduced or blocked—resulting in early labors and deliveries. Crystal discusses how these medical challenges, compounded by differing levels of support and knowledge of CF from her medical teams, impacted her emotional well-being, and how she advocated for herself when her needs were not fully met.
Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation
Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.
Funding for CF Community Voices 2025 has been provided to date by Viatris.
In this podcast, Crystal Boeckel, an adult living with cystic fibrosis (CF), reflects on her experiences being pregnant and giving birth to her two sons, the first time off and the second time on a CFTR modulator therapy. Crystal shares the health challenges she faced in the latter half of both her pregnancies with cholestasis—a condition that occurs when bile flow from the liver to the small intestine is reduced or blocked—resulting in early labors and deliveries. Crystal discusses how these medical challenges, compounded by differing levels of support and knowledge of CF from her medical teams, impacted her emotional well-being, and how she advocated for herself when her needs were not fully met.
Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation
Your thoughts are valuable to us and will help with future podcast planning! Respond to our short survey https://www.surveymonkey.com/r/MPYLX9F, and you’ll be entered in our quarterly drawing for a $25 Etsy gift card. Winners notified by email.
Funding for CF Community Voices 2025 has been provided to date by Viatris.
Matt De Fina shares the highs and lows of his life with cystic fibrosis (CF), including two double lung transplants and a career shift to winemaking in the Napa Valley. Hear about his transplant journey, and the people, events and activities that inspired his rapid recovery. Learn about the business he and his wife Denise launched, De Fina Family Cellars, the inspiration behind the artwork and the wine itself (cabernet franc = CF), and the ways in which the business helps support other CF programs.
Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
Matt De Fina shares the highs and lows of his life with cystic fibrosis (CF), including two double lung transplants and a career shift to winemaking in the Napa Valley. Hear about his transplant journey, and the people, events and activities that inspired his rapid recovery. Learn about the business he and his wife Denise launched, De Fina Family Cellars, the inspiration behind the artwork and the wine itself (cabernet franc = CF), and the ways in which the business helps support other CF programs.
Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
In this podcast, Katie Larson Ode, MD, Pediatric Endocrinology and Diabetes, discusses cystic fibrosis related diabetes (CFRD) which is the most common non-pulmonary complication among people with cystic fibrosis (CF). Dr. Larson Ode offers a better understanding of CFRD as this form of diabetes is unique to CF and is different from type 1 and type 2 diabetes. Dr. Larson Ode also shares the latest studies on how cystic fibrosis transmembrane conductance regulator (CFTR) corrective therapies could treat CFRD. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.
Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
In this podcast, Katie Larson Ode, MD, Pediatric Endocrinology and Diabetes, discusses cystic fibrosis related diabetes (CFRD) which is the most common non-pulmonary complication among people with cystic fibrosis (CF). Dr. Larson Ode offers a better understanding of CFRD as this form of diabetes is unique to CF and is different from type 1 and type 2 diabetes. Dr. Larson Ode also shares the latest studies on how cystic fibrosis transmembrane conductance regulator (CFTR) corrective therapies could treat CFRD. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.
Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
In less than three minutes, viewers will learn about cystic fibrosis (CF), the need for continued research to find a cure, the diversity of our community, and the many programs and services CFRI offers to the CF community. Please share with your networks to expand the impact of this film. Awareness is key to connect our community members to needed resources, while inspiring others to advocate for increased research funding and access to therapies.
In this podcast, Lauren Kormelink, PharmD, BCACP, University of Kentucky Adult Cystic Fibrosis Center, discusses the very real challenges of constipation among people with cystic fibrosis (CF).Dr. Kormelink compares newer medications for treatment of constipation, reviews existing data for newer medications, and provides a first look at data (pending publication) that may expand the database and what we know about these medications. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.
Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
In this podcast, Lauren Kormelink, PharmD, BCACP, University of Kentucky Adult Cystic Fibrosis Center, discusses the very real challenges of constipation among people with cystic fibrosis (CF).Dr. Kormelink compares newer medications for treatment of constipation, reviews existing data for newer medications, and provides a first look at data (pending publication) that may expand the database and what we know about these medications. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.
Click here to donate to CFRI and support the cystic fibrosis community worldwide: https://cfri.app.neoncrm.com/forms/donation
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
In this podcast, Alexandra “Xan” C.H. Nowakowski, PhD, MPH, and Associate Professor at Florida State University College of Medicine, discusses renal challenges emerging among aging adults with cystic fibrosis (CF).Dr. Nowakowski helps identify key renal complications of CF, reviews CF and kidney health, and presents best practices for CF nephrology care, as well as areas that require improvement and further study. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
In this podcast, Alexandra “Xan” C.H. Nowakowski, PhD, MPH, and Associate Professor at Florida State University College of Medicine, discusses renal challenges emerging among aging adults with cystic fibrosis (CF). Dr. Nowakowski helps identify key renal complications of CF, reviews CF and kidney health, and presents best practices for CF nephrology care, as well as areas that require improvement and further study. This presentation was recorded at CFRI’s 2024 CF Adult Retreat.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
Cystic fibrosis and men’s sexual and reproductive health has long been a neglected topic that must be addressed as part of one’s total health. In this podcast, Reuben Samuels and Georgia Brown share vital information from statistical and personal perspectives. Reuben is President of Breathe Easy International, a Certified Crisis Interventionist and CF patient and lung transplant recipient. Georgia, also living with CF, co-led the Cystic Fibrosis Sexual and Reproductive Collaborative (CFReSHC), contributed to a Sexual and Reproductive Health resource guide written by CF patients, and volunteers on CFRI’s Adult Advisory and Retreat Committees.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
Cystic fibrosis and men’s sexual and reproductive health has long been a neglected topic that must be addressed as part of one’s total health. In this podcast, Reuben Samuels and Georgia Brown share vital information from statistical and personal perspectives. Reuben is President of Breathe Easy International, a Certified Crisis Interventionist and CF patient and lung transplant recipient. Georgia, also living with CF, co-led the Cystic Fibrosis Sexual and Reproductive Collaborative (CFReSHC), contributed to a Sexual and Reproductive Health resource guide written by CF patients, and volunteers on CFRI’s Adult Advisory and Retreat Committees.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
Caleigh Haber-Takayama is living with cystic fibrosis, has undergone two double lung transplants and three open heart surgeries, and is a full-time traveler and nomad having traveled North America, Asia, and Europe. Learn imperative travel tips in how to prepare for upcoming travel, stay prepared while on your trip, and know what to do if something comes up while on your trip. Let Caleigh’s experience and tips inspire you! This podcast was recorded at CFRI’s CF Adult Retreat.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
Caleigh Haber-Takayama is living with cystic fibrosis, has undergone two double lung transplants and three open heart surgeries, and is a full-time traveler and nomad having traveled North America, Asia, and Europe. Learn imperative travel tips in how to prepare for upcoming travel, stay prepared while on your trip, and know what to do if something comes up while on your trip. Let Caleigh’s experience and tips inspire you! This podcast was recorded at CFRI’s CF Adult Retreat.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
This podcast was recorded at CFRI’s 2024 Adult Retreat. Dr. Alex Despotes, Pulmonary/Critical Care Medicine, and Pediatric Pulmonology at the University of North Carolina at Chapel Hill, and a CFRI Patrick Nash Fellow, presented an overview of heart disease, risk factors, symptoms, and prevention, and leans into the question of heart disease in CF.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
This podcast was recorded at CFRI’s 2024 Adult Retreat. Dr. Alex Despotes, Pulmonary/Critical Care Medicine, and Pediatric Pulmonology at the University of North Carolina at Chapel Hill, and a CFRI Patrick Nash Fellow, presented an overview of heart disease, risk factors, symptoms, and prevention, and leans into the question of heart disease in CF.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
Medical trauma is experienced by many individuals with cystic fibrosis - both children and adults. Kate Yablonsky, LCSW, social worker at the Stanford Adult CF Center, reviews the signs and symptoms of medical trauma, and discusses specific therapeutic models that have been found to be helpful for people with CF and their loved ones to effectively process and integrate these experiences.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
Medical trauma is experienced by many individuals with cystic fibrosis - both children and adults. Kate Yablonsky, LCSW, social worker at the Stanford Adult CF Center, reviews the signs and symptoms of medical trauma, and discusses specific therapeutic models that have been found to be helpful for people with CF and their loved ones to effectively process and integrate these experiences.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
In this panel session, three adults with CF - Rachel Alder, Jaelyn Cooper, MHA, and Abhijit Tirumala – as well as a mother of an adult son with CF, Alicia Maciel, MBA, share their personal experiences and insights navigating bias to develop productive partnerships with care teams and fellow community members so as to improve medical care and quality of life. Moderated by Kimberly Morse, MSW, LCSW, panelists provide examples of optimal care and interactions, while stressing the importance of self-advocacy and community engagement. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
In this panel session, three adults with CF - Rachel Alder, Jaelyn Cooper, MHA, and Abhijit Tirumala – as well as a mother of an adult son with CF, Alicia Maciel, MBA, share their personal experiences and insights navigating bias to develop productive partnerships with care teams and fellow community members so as to improve medical care and quality of life. Moderated by Kimberly Morse, MSW, LCSW, panelists provide examples of optimal care and interactions, while stressing the importance of self-advocacy and community engagement. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Dr. Luanne McKinnon, an adult with CF who has had a rich career in the visual arts for over forty-five years, recounts in colorful detail her life with CF, from a diagnosis in 1969 through the arc of CF care that, like a travel log, leads us from Texas to Europe to New York City, Scotland and France, then New Mexico to Palo Alto. Dr. McKinnon also shares an excerpt from her memoir-in-progress entitled, Pneuma, Latin for soul and breath. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Dr. Luanne McKinnon, an adult with CF who has had a rich career in the visual arts for over forty-five years, recounts in colorful detail her life with CF, from a diagnosis in 1969 through the arc of CF care that, like a travel log, leads us from Texas to Europe to New York City, Scotland and France, then New Mexico to Palo Alto. Dr. McKinnon also shares an excerpt from her memoir-in-progress entitled, Pneuma, Latin for soul and breath. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Dr. Natalie West, Assistant Professor of Medicine of Pulmonary and Critical Care Medicine at Johns Hopkins University and Associate Program Director of the Adult CF Program, addresses a wide range of sexual and reproductive health topics - including puberty, transgender and gender nonbinary identities, contraception, cyclical hemoptysis, fertility, contraception, and parenthood - that specifically affect people with CF. Her presentation highlights the need to optimize sexual and reproductive health care as the face of CF changes. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Dr. Natalie West, Assistant Professor of Medicine of Pulmonary and Critical Care Medicine at Johns Hopkins University and Associate Program Director of the Adult CF Program, addresses a wide range of sexual and reproductive health topics - including puberty, transgender and gender nonbinary identities, contraception, cyclical hemoptysis, fertility, contraception, and parenthood - that specifically affect people with CF. Her presentation highlights the need to optimize sexual and reproductive health care as the face of CF changes. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Nicholas Kelly, adult with CF, dietitian, author, artist, motivational speaker, and advocate, shares his experiences living with a chronic disease, what it takes to fight despite obstacles, and thrive in the face of adversity. He talks about his passion for shining a light on research, addressing inadequacies, advocating for the community, and driving the mission to make CF stand for "Cure Found." This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Nicholas Kelly, adult with CF, dietitian, author, artist, motivational speaker, and advocate, shares his experiences living with a chronic disease, what it takes to fight despite obstacles, and thrive in the face of adversity. He talks about his passion for shining a light on research, addressing inadequacies, advocating for the community, and driving the mission to make CF stand for "Cure Found." This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Robin Modlin, mother of an adult daughter with CF, artist and writer, reads excerpts from her book “Love, Courage and Miracles.” The autobiographic book chronicles Robin’s daughter Anna's life-limiting prognosis, the challenges of living with cystic fibrosis, and Anna's miracle resurrection through a double lung transplant. It is a testament to the unbreakable bond between a mother and daughter and the transformative power of love, acceptance, and hope. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Robin Modlin, mother of an adult daughter with CF, artist and writer, reads excerpts from her book “Love, Courage and Miracles.” The autobiographic book chronicles Robin’s daughter Anna's life-limiting prognosis, the challenges of living with cystic fibrosis, and Anna's miracle resurrection through a double lung transplant. It is a testament to the unbreakable bond between a mother and daughter and the transformative power of love, acceptance, and hope. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Dr. Lucas Hoffman, Professor of Pediatrics and Adjunct Professor of Microbiology at the University of Washington in Seattle and Seattle Children’s Hospital, reviews the microbes that are most frequently detected and other less common ones involved in CF airway infections. He discusses the benefits and risks of current treatments, especially antibiotics, the meaning of antibiotic resistance, and ongoing work to improve detection of infections in this new era. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Dr. Lucas Hoffman, Professor of Pediatrics and Adjunct Professor of Microbiology at the University of Washington in Seattle and Seattle Children’s Hospital, reviews the microbes that are most frequently detected and other less common ones involved in CF airway infections. He discusses the benefits and risks of current treatments, especially antibiotics, the meaning of antibiotic resistance, and ongoing work to improve detection of infections in this new era. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Dr. Benjamin Chan, Associate Research Scientist in the department of Ecology and Evolutionary Biology at Yale University, gives a comprehensive overview on bacteriophage (phage) therapy, the therapeutic administration of the bacteria killing viruses. He shares experiments and case studies that resulted in a significant decrease in production of targeted virulence factors in single-phage treated samples, a significant reduction in bacterial density in sputum, and significant increase in FEV1. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Dr. Benjamin Chan, Associate Research Scientist in the department of Ecology and Evolutionary Biology at Yale University, gives a comprehensive overview on bacteriophage (phage) therapy, the therapeutic administration of the bacteria killing viruses. He shares experiments and case studies that resulted in a significant decrease in production of targeted virulence factors in single-phage treated samples, a significant reduction in bacterial density in sputum, and significant increase in FEV1. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
In this panel session, three adults with CF - Elyse Elconin Goldberg, MA, Thomas Horal, and Colleen Lewis - share their personal experiences with diverse cancer diagnoses, while a sibling of an adult with CF – Christine Nash, MBA - describes her brother’s battle with pancreatic cancer. Moderated by Jean Hanley, MD, the discussion explores panelists’ insights and perspectives on detection and treatment, as well as the mental health implications of this dual diagnosis. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
In this panel session, three adults with CF - Elyse Elconin Goldberg, MA, Thomas Horal, and Colleen Lewis - share their personal experiences with diverse cancer diagnoses, while a sibling of an adult with CF – Christine Nash, MBA - describes her brother’s battle with pancreatic cancer. Moderated by Jean Hanley, MD, the discussion explores panelists’ insights and perspectives on detection and treatment, as well as the mental health implications of this dual diagnosis. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Samantha Johnson, Certified Child Life Specialist III at Stanford Children's Hospital, and Kate Yablonsky, social worker at the Stanford Adult CF Center, review signs and symptoms of medical trauma and discuss strategies for people with CF and their loved ones across the lifespan to effectively process and integrate these experiences. The presentation highlights the significant impact on quality of life that this under-discussed but very real form of trauma can have. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Samantha Johnson, Certified Child Life Specialist III at Stanford Children's Hospital, and Kate Yablonsky, social worker at the Stanford Adult CF Center, review signs and symptoms of medical trauma and discuss strategies for people with CF and their loved ones across the lifespan to effectively process and integrate these experiences. The presentation highlights the significant impact on quality of life that this under-discussed but very real form of trauma can have. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and former Director of the Stanford CF Center, presents an overview of the challenges of aging in the modulator era of CF, such as diabetes, a variety of cancers, cardiovascular disease, obesity, osteoporosis, and other health challenges. He also presents CFRI’s new programmatic efforts to raise expertise of caregivers for aging CF patients as well as providing accurate information and empowerment to all people with CF everywhere. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and former Director of the Stanford CF Center, presents an overview of the challenges of aging in the modulator era of CF, such as diabetes, a variety of cancers, cardiovascular disease, obesity, osteoporosis, and other health challenges. He also presents CFRI’s new programmatic efforts to raise expertise of caregivers for aging CF patients as well as providing accurate information and empowerment to all people with CF everywhere. This presentation was part of CFRI's 37th National CF Education Conference.
CFRI's 37th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, AbbVie, and the Boomer Esiason Foundation.
California has two programs that can help CF patients with health care access, but many don’t utilize this support because they are not aware of their eligibility and potential assistance. Lynne Kinst, Executive Director of the Hemophilia Council of California, provides an overview of California’s Genetically Handicapped Person’s Program (GHPP) which helps adult beneficiaries with their health care costs, and California Children's Services, which helps those under 21. Learn about eligibility, the application process and enrollee benefits.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
California has two programs that can help CF patients with health care access, but many don’t utilize this support because they are not aware of their eligibility and potential assistance. Lynne Kinst, Executive Director of the Hemophilia Council of California, provides an overview of California’s Genetically Handicapped Person’s Program (GHPP) which helps adult beneficiaries with their health care costs, and California Children's Services, which helps those under 21. Learn about eligibility, the application process and enrollee benefits.
CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
In this podcast, Arek Puzia, CPA, CFP, and the father of a daughter with cystic fibrosis, provides information on planning for the future when resources are very limited. Learn what to consider in growing your assets with a low cost and well diversified portfolio, company 401K plans, and first-time home ownership programs. Also, Arek shares some tips on lowering the cost of living with some cost savings hacks, and where to find resources that may be able to help with the high cost of living with cystic fibrosis.
CFRI has an extensive resource list available on its website. Go to https://www.cfri.org/education-support/cf-patient-assistance-resources/ to review and/or download a copy.
CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
In this podcast, Arek Puzia, CPA, CFP, and the father of a daughter with cystic fibrosis, provides information on planning for the future when resources are very limited. Learn what to consider in growing your assets with a low cost and well diversified portfolio, company 401K plans, and first-time home ownership programs. Also, Arek shares some tips on lowering the cost of living with some cost savings hacks, and where to find resources that may be able to help with the high cost of living with cystic fibrosis.
CFRI has an extensive resource list available on its website. Go to https://www.cfri.org/education-support/cf-patient-assistance-resources/ to review and/or download a copy.
CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
The hardships of eating on a restricted budget are widespread, and food insecurity is three times higher within the cystic fibrosis community than the national average. Join Arek Puzia, CPA, CFP, father of a child with CF, Tiffany Raffino, LCSW, MSW, from UCSF, and Georgia Brown, advocate and an adult with CF, for a panel discussion on strategies to cope with increased food costs. Learn tips to ease the burden of grocery expenses and food prep, while creating nutritious meals for you or your family.
CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
The hardships of eating on a restricted budget are widespread, and food insecurity is three times higher within the cystic fibrosis community than the national average. Join Arek Puzia, CPA, CFP, father of a child with CF, Tiffany Raffino, LCSW, MSW, from UCSF, and Georgia Brown, advocate and an adult with CF, for a panel discussion on strategies to cope with increased food costs. Learn tips to ease the burden of grocery expenses and food prep, while creating nutritious meals for you or your family.
CFRI’s 2024 CF Community Voices is made possible through support from Viatris, Vertex Pharmaceuticals, and Gilead Sciences.
People with cystic fibrosis have 5-10 times the risk of developing colon cancer (25-30 times the risk post-transplant). Learn about the connection between colon cancer and CF, and the vital importance of early screening in this recorded webinar.
CFRI Executive Director, Siri Vaeth, was joined by community members Anna Payne, Thomas Horal, and Elyse Elconin-Goldberg, adults with CF who shared their personal experiences with colon cancer screening, prevention and diagnosis.
People with cystic fibrosis have 5-10 times the risk of developing colon cancer (25-30 times the risk post-transplant). Learn about the connection between colon cancer and CF, and the vital importance of early screening in this recorded webinar.
CFRI Executive Director, Siri Vaeth, was joined by community members Anna Payne, Thomas Horal, and Elyse Elconin-Goldberg, adults with CF who shared their personal experiences with colon cancer screening, prevention and diagnosis.
La guía integral de recursos de CFRI proporciona información sobre varios programas ofrecidos por nuestros socios. Escuche a Alicia Maciel, miembro de la comunidad de CFRI, mientras explica dónde encontrar y como utilizar la guía de recursos de asistencia al paciente de CFRI. Manténgase informado de cómo acceder a fuentes de apoyo financiero, asistencia de copagos para acceder a medicamentos, becas para personas con FQ y sus familiares, y mucho más.
¿Sabía que las personas con FQ tienen entre 5 y 10 veces más probabilidades de desarrollar cáncer de colon?
Las personas con FQ tras un trasplante de pulmón tienen un riesgo entre 25 a 30 veces mayor, y los portadores de FQ también tienen más probabilidades de desarrollar cáncer de colon. Escuche a Alicia Maciel, miembro de la comunidad de CFRI, hablar sobre la hoja informativa del cáncer de colon. Conozca los riesgos y hable con su médico hoy sobre la prevención.
CF impacts people of every race and ethnicity. Due to the misperception of CF as a disease impacting only those of European descent, many individuals go years without a diagnosis. In this moving film, CF community members share their experiences and their commitment to advocating for increased awareness on diversity, equity and inclusion among the CF and general population.
CFRI’s Faces of CF Diversity and Inclusion Program is sponsored by Vertex Pharmaceuticals, Viatris, Gilead Sciences, Chiesi USA, and Genentech, with additional translation support provided by Genentech.
Dr. Stephen Aller, Associate Professor at the Department of Pharmacology and Toxicology at the University of Alabama in Birmingham, presents results from CFRI-funded research on the role of CFTR Arginine-933 in FDA-approved drug potentiation. His team used cryo-electron microscopy (cryo-EM) to visualize high-quality structures with limited quantities of purified CFTR. This presentation was part of CFRI's 36th National CF Education Conference.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dr. Stephen Aller, Associate Professor at the Department of Pharmacology and Toxicology at the University of Alabama in Birmingham, presents results from CFRI-funded research on the role of CFTR Arginine-933 in FDA-approved drug potentiation. His team used cryo-electron microscopy (cryo-EM) to visualize high-quality structures with limited quantities of purified CFTR. This presentation was part of CFRI's 36th National CF Education Conference.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dr. Kenichi Okuda, a Research Associate at Marsico Lung Institute at University of North Carolina at Chapel Hill, presents results from CFRI-funded research on pathways maintaining basal mucin and CFTR-mediated fluid secretion in the human distal airway. He argues that airway cells are a therapeutic target for molecular therapy for CFTR function restoration. This presentation was part of CFRI's 36th National CF Education Conference.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dr. Kenichi Okuda, a Research Associate at Marsico Lung Institute at University of North Carolina at Chapel Hill, presents results from CFRI-funded research on pathways maintaining basal mucin and CFTR-mediated fluid secretion in the human distal airway. He argues that airway cells are a therapeutic target for molecular therapy for CFTR function restoration. This presentation was part of CFRI's 36th National CF Education Conference.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dr. Ahmet Uluer, a medicine and pediatric trained pulmonologist and Director of the Adult Cystic Fibrosis Program at the combined Boston Children’s Hospital and Brigham & Women’s Hospital Adult Cystic Fibrosis Center, gives an overview of the impact of and risk associated with aging for people with CF, including GI cancers, complications associated with diabetes, hypertension, bone disease, hearing loss, kidney disease, cardiovascular disease, among others.
Anna Payne, a 36 year-old woman living with CF and colon cancer, shares the real-life impact that colon cancer has on people and what it is like to live with two diseases. Diagnosed at 34 - well before the recommended screening age of 40 – she is now seeking to educate others about the elevated risk that CF patients and carriers have of developing colon cancer. This joint presentation was part of CFRI's 36th National CF Education Conference.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Lucy Barnes, Matthew DeFina, and Carl Robinson, three adults with CF who are also parents, share their individual paths to parenthood. Moderated by Mary Helmers, the discussion explores panelists’ experiences with reproductive health discussions with their CF care providers; their partners’ key roles; finding balance with parenting, working and managing CF; the impact of pregnancy and/or parenthood upon health maintenance; and addressing psychosocial care needs. This presentation was part of CFRI's 36th National CF Education Conference.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dr. Deepika Polineni, Cystic Fibrosis Center Director and Associate Professor in the Department of Pediatrics, Division of Allergy and Pulmonary Medicine at Washington University in St. Louis, provides a comprehensive overview of messenger ribonucleic acid (mRNA) therapy as a novel therapeutic option for CF. She discusses early studies of safety and tolerability in people with CF, as well as the potential of mRNA therapy to improve lung disease for people with CF irrespective of their CFTR genotype. This presentation was part of CFRI's 36th National CF Education Conference.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dominic Quagliozzi is a captivating and renowned artist living with cystic fibrosis and the recipient of a double lung transplant. He works within several mediums including painting, drawing, as well as performance and video art. In Part Two, Dominic shares a more in-depth look into his works, including the motivation and reasoning in the physical materials he incorporates into his work. He offers close ups on several pieces in his studio, and shares the inspiration behind the subject matter and materials expressed in his art.
https://www.instagram.com/artistdominic/
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
Dominic Quagliozzi is a captivating and renowned artist living with cystic fibrosis and the recipient of a double lung transplant. He works within several mediums including painting, drawing, as well as performance and video art. In Part One, Dominic shares how he first started on his journey expressing his lived experience through art, and how art has integrated in his approach and outlook on life. Hear how his journey through art helps him explore his experiences and forge his identity, create his own language of expression, reclaim agency over CF and transplantation, and deepen his connection to community.
https://www.instagram.com/artistdominic/
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
Dominic Quagliozzi is a captivating and renowned artist living with cystic fibrosis and the recipient of a double lung transplant. He works within several mediums including painting, drawing, as well as performance and video art. In Part Two, Dominic shares a more in-depth look into his works, including the motivation and reasoning in the physical materials he incorporates into his work. He offers close ups on several pieces in his studio, and shares the inspiration behind the subject matter and materials expressed in his art.
https://www.instagram.com/artistdominic/
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
Dominic Quagliozzi is a captivating and renowned artist living with cystic fibrosis and the recipient of a double lung transplant. He works within several mediums including painting, drawing, as well as performance and video art. In Part One, Dominic shares how he first started on his journey expressing his lived experience through art, and how art has integrated in his approach and outlook on life. Hear how his journey through art helps him explore his experiences and forge his identity, create his own language of expression, reclaim agency over CF and transplantation, and deepen his connection to community.
https://www.instagram.com/artistdominic/
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
Dr. Amanda Bruce, Associate Professor and licensed clinical psychologist at the University of Kansas Medical Center, and Dr. Deborah Friedman, licensed clinical psychologist in the Massachusetts General Hospital Department of Psychiatry and Assistant Professor of Psychology at Harvard Medical School, discuss the use of cognitive-behavioral therapy (CBT) for reducing pain related to CF. They share findings from stakeholder interviews about the experience of living with both CF and chronic pain, as well as describe evidence-based mind-body approaches to pain management. This presentation was part of CFRI's 36th National CF Education Conference.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dr. Carlos Milla, Professor of Pediatrics at Stanford University School of Medicine and the Director of the Stanford Cystic Fibrosis Center, and Dr. Nam Soo Joo, Senior Research Scientist in the Department of Pediatrics at Stanford University, present results from CFRI-funded research on improving CF airway mucociliary clearance. They discuss results from experiments with tracheae from ferrets and piglets. This presentation was part of CFRI's 36th National CF Education Conference.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dr. Zachary Sellers, Assistant Professor of Pediatrics and the Associate Chair of Research in Pediatric Gastroenterology at Stanford University, presents results from CFRI-funded research on targeting IRBIT to correct bicarbonate secretory defects in CF. His work aims to identify new ways to treat CF-associated gastrointestinal complications regardless of the underlying CFTR mutation. This presentation was part of CFRI's 36th National CF Education Conference.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dr. Steven Jonas, Assistant Professor in the Department of Pediatrics at the UCLA David Geffen School of Medicine and California NanoSystems Institute, presents results from CFRI-funded research on nanotechnologies for CF gene therapy. He presents a suite of tools and methods that could serve as building blocks for establishing CF gene therapy solutions. This presentation was part of CFRI's 36th National CF Education Conference.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dr. Naren Kumar, post-doctoral fellow in the lab of Dr. Suzanne Fleiszig at the University of California Berkeley, presents results from CFRI-funded research on intracellular diversification of Pseudomonas aeruginosa in chronic lung infections. He discusses findings from experiments using live timelapse imaging and molecular methods to determine genes and proteins expressed by bacteria during intracellular infection of epithelial cells. This presentation was part of CFRI's 36th National CF Education Conference.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dr. Sriram Vaidyanathan, a principal investigator in the Center for Gene Therapy at the Abigail Wexner Research Institute at Nationwide Children’s Hospital in Ohio, presents results from CFRI-funded research on airway stem cell transplantation into the sinuses using fibrinogen scaffolds. This presentation was part of CFRI's 36th National CF Education Conference.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dr. Paul Bollyky, an Associate Professor and an infectious disease physician at Stanford University, presents results from CFRI-funded research on the development of phage therapy for antimicrobial-resistant infections in CF. He discusses a novel approach to design effective, broad-spectrum phage cocktails that relies on combining phages with different, complimentary receptors. This presentation was part of CFRI's 36th National CF Education Conference.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Carl Robinson and Matt DeFina discuss the rewards and challenges of raising children when one has CF. Moderated by Mary Helmers, RN, they describe their different paths to parenthood, and answer questions. This episode is a recording of a webinar from September 2023.
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
Carl Robinson and Matt DeFina discuss the rewards and challenges of raising children when one has CF. Moderated by Mary Helmers, RN, they describe their different paths to parenthood, and answer questions. This episode is a recording of a webinar from September 2023.
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
Dr. Matthew Porteus, Sutardja Chuk Professor of Definitive and Curative Medicine and a Professor in the Department of Pediatrics at Stanford University, gives a comprehensive overview of advances in gene therapy for cystic fibrosis. He discusses different approaches, outcomes of recent studies, as well as next steps to obtain FDA clearance to test gene therapy approaches in CF patients. This presentation was part of CFRI's 36th National CF Education Conference on July 29, 2023.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dr. Matthew Porteus, Sutardja Chuk Professor of Definitive and Curative Medicine and a Professor in the Department of Pediatrics at Stanford University, gives a comprehensive overview of advances in gene therapy for cystic fibrosis. He discusses different approaches, outcomes of recent studies, as well as next steps to obtain FDA clearance to test gene therapy approaches in CF patients. This presentation was part of CFRI's 36th National CF Education Conference on July 29, 2023.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dr. Susanna McColley, Scientific Director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago, and Professor of Pediatrics in Pulmonary and Sleep Medicine at Northwestern University Feinberg School of Medicine, explains how CF clinical trial enrollment, newborn screening, and global availability create inequities. She also discusses how policies and practice must advance so that every person with CF has a fair and just opportunity to attain their highest level of health. This presentation was part of CFRI's 36th National CF Education Conference on July 29, 2023.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
Dr. Susanna McColley, Scientific Director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago, and Professor of Pediatrics in Pulmonary and Sleep Medicine at Northwestern University Feinberg School of Medicine, explains how CF clinical trial enrollment, newborn screening, and global availability create inequities. She also discusses how policies and practice must advance so that every person with CF has a fair and just opportunity to attain their highest level of health. This presentation was part of CFRI's 36th National CF Education Conference on July 29, 2023.
CFRI's 36th National CF Education Conference was sponsored by Viatris, Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, AbbVie, Genentech, and the Boomer Esiason Foundation.
In this third podcast of a three-part series, Dr. Ali Akbar provides an update on efforts in Pakistan to raise CF awareness and improve access to diagnosis and care. He shares current needs to advance momentum to save lives. As Dr. Akbar shares, cystic fibrosis is significantly under diagnosed in Pakistan. Dr. Akbar’s vision is that no one will be left behind in receiving a diagnosis and care, regardless of where one is born. This is part 3 of a 3-part series.
Click here to connect with the Pakistan Cystic Fibrosis Support Network: / @pakistancysticfibrosissupp1959
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
In this third podcast of a three-part series, Dr. Ali Akbar provides an update on efforts in Pakistan to raise CF awareness and improve access to diagnosis and care. He shares current needs to advance momentum to save lives. As Dr. Akbar shares, cystic fibrosis is significantly under diagnosed in Pakistan. Dr. Akbar’s vision is that no one will be left behind in receiving a diagnosis and care, regardless of where one is born. This is part 3 of a 3-part series.
Click here to connect with the Pakistan Cystic Fibrosis Support Network: / @pakistancysticfibrosissupp1959
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
In this inspiring podcast, Katie O'Grady, from Boston, Massachusetts and living with cystic fibrosis, describes her lifelong love of running, and the impact this has had on her health. In 2019, Katie joined a group of runners with CF, recruited by Dr. Ahmet Uluer, that ran the Boston Marathon. Recognizing that running is not for everyone, Katie shares her tips for starting and staying with an exercise program, and how to discuss this topic with your CF care team.
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
In this inspiring podcast, Katie O'Grady, from Boston, Massachusetts and living with cystic fibrosis, describes her lifelong love of running, and the impact this has had on her health. In 2019, Katie joined a group of runners with CF, recruited by Dr. Ahmet Uluer, that ran the Boston Marathon. Recognizing that running is not for everyone, Katie shares her tips for starting and staying with an exercise program, and how to discuss this topic with your CF care team.
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
Born in Pakistan and currently practicing Pediatric Respiratory Medicine in the UK, Dr. Ali Akbar shares insights from his decades of dedication and work to improve the lives of those with cystic fibrosis in Pakistan. Meet the medical teams and families in Pakistan that Dr. Akbar supports through CF clinics and education to improve medical care. Gain a better understanding of the obstacles overcome, and the needs still to be met to create change in Dr. Akbar's native country. As Dr. Akbar shares, “The disparities in the care between the West and the East, we can equalize that. All patients deserve to have a good standard of care wherever they are.” This is Part 2 of a 3-part series.
Click here to connect with the Pakistan Cystic Fibrosis Support Network that Dr. Akbar mentions in this podcast:
https://www.youtube.com/channel/UC7Fo0uekygrPEGzmPipdOhQ
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
Born in Pakistan and currently practicing Pediatric Respiratory Medicine in the UK, Dr. Ali Akbar shares insights from his decades of dedication and work to improve the lives of those with cystic fibrosis in Pakistan. Meet the medical teams and families in Pakistan that Dr. Akbar supports through CF clinics and education to improve medical care. Gain a better understanding of the obstacles overcome, and the needs still to be met to create change in Dr. Akbar's native country. As Dr. Akbar shares, “The disparities in the care between the West and the East, we can equalize that. All patients deserve to have a good standard of care wherever they are.” This is Part 2 of a 3-part series.
Click here to connect with the Pakistan Cystic Fibrosis Support Network that Dr. Akbar mentions in this podcast:
https://www.youtube.com/channel/UC7Fo0uekygrPEGzmPipdOhQ
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
In this podcast, Dr. Xinlun Tian, MD, Professor, Dept. of Pulmonary and Critical Care Medicine, Peking Union Medical College Hospital, shares the history and phenotypes of cystic fibrosis (CF), current conditions regarding the high amount of projected undiagnosed cases of CF in China, and shares the immediate needs to facilitate closing the gap among the thousands of undiagnosed families living with CF in China.
Dr. Tian received her medical degree at Peking Union Medical College in China. She worked as a Research Fellow at the Cincinnati Children’s Hospital Medical Centre, OH and UC San Francisco, CA, and as a Visiting Clinician at the Mayo Clinic, MN.
Chinese Experts Consensus Statement: Diagnosis and Treatment of Cystic Fibrosis (2023) - Includes the 32 questions referenced in this podcast: https://url.avanan.click/v2/___https://pubmed.ncbi.nlm.nih.gov/36990700/___.YXAzOmNmcmk6YTpvOjg4OTc2NjVhMWY1NjhmYmE2OTEwYjNkNWYxMWI4Nzk1OjY6ODE5NTpjZTc3OTY2ODMwN2VlNzJlNDg0MjIzYzBiOGViYWZhOWJiNWY4NDgwYjFhMGM1OTQ5YTNkNWJiZjBlYzQ0ZTVhOnQ6VA
In this podcast, Dr. Xinlun Tian, MD, Professor, Dept. of Pulmonary and Critical Care Medicine, Peking Union Medical College Hospital, shares the history and phenotypes of cystic fibrosis (CF), current conditions regarding the high amount of projected undiagnosed cases of CF in China, and shares the immediate needs to facilitate closing the gap among the thousands of undiagnosed families living with CF in China.
Dr. Tian received her medical degree at Peking Union Medical College in China. She worked as a Research Fellow at the Cincinnati Children’s Hospital Medical Centre, OH and UC San Francisco, CA, and as a Visiting Clinician at the Mayo Clinic, MN.
Chinese Experts Consensus Statement: Diagnosis and Treatment of Cystic Fibrosis (2023) - Includes the 32 questions referenced in this podcast: https://url.avanan.click/v2/___https://pubmed.ncbi.nlm.nih.gov/36990700/___.YXAzOmNmcmk6YTpvOjg4OTc2NjVhMWY1NjhmYmE2OTEwYjNkNWYxMWI4Nzk1OjY6ODE5NTpjZTc3OTY2ODMwN2VlNzJlNDg0MjIzYzBiOGViYWZhOWJiNWY4NDgwYjFhMGM1OTQ5YTNkNWJiZjBlYzQ0ZTVhOnQ6VA
Copay accumulator programs are increasingly embedded within insurance plans, creating significant financial hardship for patients. Copay accumulator programs allow payers to accept patients' financial assistance to access medications, but then do not apply these funds to the patients' deductible and out of pocket expenses. Many people face insurmountable costs to access needed medications, leading to greater health disparities and poor health outcomes. Learn more about copay accumulator programs from two patient advocates, Siri Vaeth and Brian Callanan.
NOTE: Since the filming of this podcast, California legislation, AB 874, referenced in the recording, has been stalled and will now be a two-year bill.
Edited by Brandon Delgado.
CF Community Voices is made possible with grants from Vertex Pharmaceuticals, Viatris, Gilead Sciences, Chiesi USA, and Genentech.
Copay accumulator programs are increasingly embedded within insurance plans, creating significant financial hardship for patients. Copay accumulator programs allow payers to accept patients' financial assistance to access medications, but then do not apply these funds to the patients' deductible and out of pocket expenses. Many people face insurmountable costs to access needed medications, leading to greater health disparities and poor health outcomes. Learn more about copay accumulator programs from two patient advocates, Siri Vaeth and Brian Callanan.
NOTE: Since the filming of this podcast, California legislation, AB 874, referenced in the recording, has been stalled and will now be a two-year bill.
Edited by Brandon Delgado.
CF Community Voices is made possible with grants from Vertex Pharmaceuticals, Viatris, Gilead Sciences, Chiesi USA, and Genentech.
Part 1 of 3 - Meet Dr. Ali Akbar, Consultant Respiratory Pediatrician, Birmingham, UK and hear his story of overcoming obstacles to provide needed care for families living with cystic fibrosis in Pakistan. Born in Pakistan and currently practicing Pediatric Respiratory Medicine in the UK, Dr. Akbar has dedicated his career to improving the lives and outcomes for those living with CF in Pakistan where the disease is little understood, underdiagnosed, and where access to care is scarce. If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7 CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
Part 1 of 3 - Meet Dr. Ali Akbar, Consultant Respiratory Pediatrician, Birmingham, UK and hear his story of overcoming obstacles to provide needed care for families living with cystic fibrosis in Pakistan. Born in Pakistan and currently practicing Pediatric Respiratory Medicine in the UK, Dr. Akbar has dedicated his career to improving the lives and outcomes for those living with CF in Pakistan where the disease is little understood, underdiagnosed, and where access to care is scarce. If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7 CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.
People with cystic fibrosis have 5 to 10 times the rates of colon cancer as the general public. Those post transplant have over 25 times the risk. No one has worked harder to raise awareness of the higher risk of colon cancer among those with cystic fibrosis than Anna Payne. Anna, who lives with CF and was diagnosed with Stage 4 colon cancer at the age of 34, provides an update on her journey and a reminder to get a life-saving colonoscopy.
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, Genentech, and Viatris.
People with cystic fibrosis have 5 to 10 times the rates of colon cancer as the general public. Those post transplant have over 25 times the risk. No one has worked harder to raise awareness of the higher risk of colon cancer among those with cystic fibrosis than Anna Payne. Anna, who lives with CF and was diagnosed with Stage 4 colon cancer at the age of 34, provides an update on her journey and a reminder to get a life-saving colonoscopy.
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, Genentech, and Viatris.
Skin cancer is a risk for everyone, but in particular for those with cystic fibrosis post-transplant. Learn valuable tips to protect yourself from Dr. Jennifer Wang, MD, Clinical Assistant Professor of Dermatology at Stanford, who specializes in melanoma, non-melanoma skin cancers, and cutaneous lymphomas. Dr. Wang takes special interest in skin cancer surveillance and treatment in high-risk populations, such as cystic fibrosis and solid organ transplant recipients.
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, and Viatris.
Skin cancer is a risk for everyone, but in particular for those with cystic fibrosis post-transplant. Learn valuable tips to protect yourself from Dr. Jennifer Wang, MD, Clinical Assistant Professor of Dermatology at Stanford, who specializes in melanoma, non-melanoma skin cancers, and cutaneous lymphomas. Dr. Wang takes special interest in skin cancer surveillance and treatment in high-risk populations, such as cystic fibrosis and solid organ transplant recipients.
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, and Viatris.
Rod Spadinger and Joshua Bauder share the inspirational work of CF Vests Worldwide, which ships vests to individuals with CF in developing countries, who have no access to vests and medical equipment. Josh, who lives in Thailand, shares his experiences caring for his young daughter with CF. Meet the people whose lives are changed thanks to this organization's mission-driven work.
CF Community Voices is made possible to date through grants from Chiesi USA, Genentech, Gilead Sciences, and Viatris.
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
Rod Spadinger and Joshua Bauder share the inspirational work of CF Vests Worldwide, which ships vests to individuals with CF in developing countries, who have no access to vests and medical equipment. Josh, who lives in Thailand, shares his experiences caring for his young daughter with CF. Meet the people whose lives are changed thanks to this organization's mission-driven work.
CF Community Voices is made possible to date through grants from Chiesi USA, Genentech, Gilead Sciences, and Viatris.
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
Nicholas Kelly, dietitian, motivational speaker, author, DJ, artist, poet, dancer, advocate, and CF Warrior, shares the secrets to his freestyling "sauce.” Enjoy his inspirational freestyle artistry entitled “Rise Up For A Dream”, and learn how you can empower and express your unique voice.
If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7
CF Community Voices is made possible to date through grants from Chiesi USA, Genentech, and Viatris.
Cystic fibrosis (CF) has been diagnosed in over 40,000 people in the United States. This brief film highlights symptoms, the diversity of our community, and the work of the Cystic Fibrosis Research Institute (CFRI) to ensure all people with cystic fibrosis have access to needed therapies.
This film was made possible through educational grants from Vertex Pharmaceuticals, AbbVie, Gilead Sciences, Ionis Pharmaceuticals, and Genentech.
Enfrentar un diagnóstico de fibrosis quística puede ser extremadamente aterrador y desafiante. En este conmovedor podcast, dos madres de niños con fibrosis quística, Alicia Maciel y Gina Serrato, hablan sobre sus experiencias cuando se enteraron de que sus hijos tenían FQ, y lo que les ha ayudado a desarrollar resiliencia y fortaleza personal a lo largo del viaje para garantizar la mejor calidad de vida de sus hijos.
Por su generoso apoyo, un agradecimiento especial a: Vertex Pharmaceuticals, Genentech, Chiesi USA, Gilead Sciences, y Viatris.
Oral health is key to the overall health of individuals living with cystic fibrosis. In this podcast, recorded at the 2022 CF Adult Retreat, Dr. Martina Hayes, Associate Professor at the Dublin Dental University Hospital in Ireland, discusses what is known about CF and oral health; explains links between CF and enamel defects, tooth decay, gum disease, and more; and offers ways to improve oral health.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
This episode features Ashe Milkovic, NTP, IC-FHS, FBCS, Founder amd CEO of The International Association for Functional Hormone Health. Learn about the primary roles of hormones in the body, and how stress and inflammation interfere with hormone health. Ashe also shares ways to lower stress hormones to increase better hormonal balance, decrease inflammation, and nourish healthier stress responses.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
Since CFRI awarded its first CF research grant to the legendary Paul Quinton, PhD, in 1977, CFRI has provided over $10 million to support innovative research at medical and academic institutions across the United States. In this film, current and recently funded CF researchers share about their work, the importance of continued focus on CF research, and the role CFRI has played in furthering their scientific projects and the search for a CF cure.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
CFRI's Virtual 35th National CF Education Conference featured a panel discussion about the impact of CF on the siblings. Three siblings of adults with CF – Marina Gonzales, Damian Rice, and Suraj Patel – opened up about how their siblings’ disease has shaped and influenced their own lives. The panel was moderated by Deborah Menet, LCSW, a CF social worker at the Stanford CF Center.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Melissa Putman, Assistant Professor at Harvard Medical School and an endocrinologist at Boston Children’s Hospital (BCH) and Massachusetts General Hospital (MGH), gives a comprehensive overview on the connection between cystic fibrosis and bone disease, and the various risk factors contributing to compromised bone health. She also discusses prevention and treatment options, as well as the impact of CFTR modulators on bone health. This presentation was part of CFRI's Virtual 35th National CF Education Conference.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
In the first half of this two-part session, Jacob Fraker, MSW, an adult with CF who serves in multiple roles in the state Capitol, including as a legislative aide to a California State Senator, provided an overview of the many ways in which members of our CF community can participate in advocacy efforts individually, through CFRI, and within coalitions. Part two of the session featured Diane Shader Smith, who took on the role of advocate after her daughter Mallory lost her battle with antibiotic-resistant pathogens. Diane talked about the need for new antibiotics, antifungals, and phage therapy, the PASTEUR Act, and the groups and efforts that have mobilized to respond to this health crisis. This presentation was part of CFRI's Virtual 35th National CF Education Conference.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
CFRI's Virtual 35th National CF Education Conference featured a panel discussion about the impact of CF on the siblings. Three siblings of adults with CF – Marina Gonzales, Damian Rice, and Suraj Patel – opened up about how their siblings’ disease has shaped and influenced their own lives. The panel was moderated by Deborah Menet, LCSW, a CF social worker at the Stanford CF Center.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Melissa Putman, Assistant Professor at Harvard Medical School and an endocrinologist at Boston Children’s Hospital (BCH) and Massachusetts General Hospital (MGH), gives a comprehensive overview on the connection between cystic fibrosis and bone disease, and the various risk factors contributing to compromised bone health. She also discusses prevention and treatment options, as well as the impact of CFTR modulators on bone health. This presentation was part of CFRI's Virtual 35th National CF Education Conference.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
In the first half of this two-part session, Jacob Fraker, MSW, an adult with CF who serves in multiple roles in the state Capitol, including as a legislative aide to a California State Senator, provided an overview of the many ways in which members of our CF community can participate in advocacy efforts individually, through CFRI, and within coalitions. Part two of the session featured Diane Shader Smith, who took on the role of advocate after her daughter Mallory lost her battle with antibiotic-resistant pathogens. Diane talked about the need for new antibiotics, antifungals, and phage therapy, the PASTEUR Act, and the groups and efforts that have mobilized to respond to this health crisis. This presentation was part of CFRI's Virtual 35th National CF Education Conference.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Raheema Arbi is a young woman living with cystic fibrosis. In her native Pakistan, those living with CF have little access to therapies and care. In this podcast, Raheema shares her personal story of resilience, and her hope that all those living with CF - regardless of country - will receive an accurate diagnosis and optimal medical care, She hopes you will watch and share her story to raise global CF awareness.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
Dr. Richard Simon, Professor Emeritus at the Division of Pulmonary and Critical Care Medicine at the University of Michigan, gives a comprehensive overview of the health challenges faced by an aging CF population. In addition to general aging symptoms such as decreasing mobility, reduced strength, and memory loss, there are CF-specific issues such as CF-related diabetes, CF-related bone disease, and gastrointestinal cancers. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Donald Chi, Professor and the Lloyd and Kay Chapman Endowed Chair of Oral Health at the University of Washington School of Dentistry in Seattle, WA, gives a comprehensive summary of the available scientific data on the oral health of individuals with CF. He presents information on CF-specific risk factors that can lead to poor oral health and provides information about ongoing studies aimed at understanding the links between oral and overall health in CF. This presentation was part of CFRI's Virtual 35th National CF Education Conference.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Gregory Burkeen, a PhD Candidate at San Diego State University in Drs. Anca Segall and Forest Rohwer’s labs, presents results from CFRI-funded research on novel models of CF mucus plugs for testing phage and tailocin therapy. He proposes an in-vitro model based on artificial sputum that is tailored to the individual, and can be used to test the safety and efficacy of personalized therapeutic regimens. This presentation was part of CFRI's Virtual 35th National CF Education Conference.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Steven Jonas, a pediatric physician scientist and Assistant Professor in the Department of Pediatrics at the UCLA David Geffen School of Medicine and California NanoSystems Institute, presents results from CFRI-funded research on nanotechnologies to enable cystic fibrosis gene therapies. He highlights his team’s approach to overcome common obstacles to gene therapy through the design and testing of CRISPR/Cas9-based gene-editing cargoes for CFTR correction and nanoparticle carriers that can be delivered as aerosolized suspensions to enable inhalable gene therapy solutions for CF. This presentation was part of CFRI's Virtual 35th National CF Education Conference.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Xiaopeng Li, Associate Professor in the Department of Pediatrics and Human Development in the College of Human Medicine at Michigan State University, presents results from CFRI-funded research on selective targeting distal small airways by adeno-associated virus (AAV) vectors. He discusses findings from CF pig models that support AAV4 as a suitable viral vector for CF gene therapy to target small airway secretory cells. This presentation was part of CFRI's Virtual 35th National CF Education Conference.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Richard Simon, Professor Emeritus at the Division of Pulmonary and Critical Care Medicine at the University of Michigan, gives a comprehensive overview of the health challenges faced by an aging CF population. In addition to general aging symptoms such as decreasing mobility, reduced strength, and memory loss, there are CF-specific issues such as CF-related diabetes, CF-related bone disease, and gastrointestinal cancers. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Donald Chi, Professor and the Lloyd and Kay Chapman Endowed Chair of Oral Health at the University of Washington School of Dentistry in Seattle, WA, gives a comprehensive summary of the available scientific data on the oral health of individuals with CF. He presents information on CF-specific risk factors that can lead to poor oral health and provides information about ongoing studies aimed at understanding the links between oral and overall health in CF. This presentation was part of CFRI's Virtual 35th National CF Education Conference.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Gregory Burkeen, a PhD Candidate at San Diego State University in Drs. Anca Segall and Forest Rohwer’s labs, presents results from CFRI-funded research on novel models of CF mucus plugs for testing phage and tailocin therapy. He proposes an in-vitro model based on artificial sputum that is tailored to the individual, and can be used to test the safety and efficacy of personalized therapeutic regimens. This presentation was part of CFRI's Virtual 35th National CF Education Conference.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Steven Jonas, a pediatric physician scientist and Assistant Professor in the Department of Pediatrics at the UCLA David Geffen School of Medicine and California NanoSystems Institute, presents results from CFRI-funded research on nanotechnologies to enable cystic fibrosis gene therapies. He highlights his team’s approach to overcome common obstacles to gene therapy through the design and testing of CRISPR/Cas9-based gene-editing cargoes for CFTR correction and nanoparticle carriers that can be delivered as aerosolized suspensions to enable inhalable gene therapy solutions for CF. This presentation was part of CFRI's Virtual 35th National CF Education Conference.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Xiaopeng Li, Associate Professor in the Department of Pediatrics and Human Development in the College of Human Medicine at Michigan State University, presents results from CFRI-funded research on selective targeting distal small airways by adeno-associated virus (AAV) vectors. He discusses findings from CF pig models that support AAV4 as a suitable viral vector for CF gene therapy to target small airway secretory cells. This presentation was part of CFRI's Virtual 35th National CF Education Conference.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Many individuals with cystic fibrosis suffer from chronic joint pain. In this podcast, recorded at CFRI's CF Adult Retreat in August, 2022, Dr. Beth Clarke, from the University of Glasgow in Scotland, discusses the causes of joint pain and cystic fibrosis associated arthritis (CFA), exercise and CFA and strategies to address this pain.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
At CFRI's virtual Conference Awards Celebration on July 30, 2022, we honored these extraordinary individuals: Richard Moss, MD - Paul M. Quinton Cystic Fibrosis Research Legacy Award; Sonya Haggett, LCSW - CFRI Partners in Living Award In Memory of Anabel Stenzel; Anna Payne – Dave Stuckert Memorial Volunteer of the Year Award; Dennis Nielson, MD, PhD - Professional of the Year Award.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Janet Woodcock, Principal Deputy Commissioner of the US Food and Drug Administration, delivered Keynote Remarks at the opening of CFRI’s 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Manu Jain, Professor of Medicine and Pediatrics at Northwestern University’s Feinberg School of Medicine and Director of the Adult CF Program at Northwestern, presents a comprehensive overview on mRNA therapy for people with cystic fibrosis, a mutation-agnostic treatment that could work for any person with CF regardless of their CFTR mutation. Dr. Jain provides an update on the principles behind mRNA therapy, the hurdles it faces to become a viable treatment option, and the various programs in clinical development. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Paul McCray, Professor of Pediatrics, Division of Pulmonary Medicine, and Professor of Microbiology and Immunology at the University of Iowa, presents an overview on advances in gene therapy for cystic fibrosis, with a focus on gene therapy for lung disease treatment and prevention. Dr. McCray explores the different gene addition and gene editing strategies under investigation and reviews the challenges of delivery to the lung. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Emily Kramer-Golinkoff, an adult with cystic fibrosis and the Co-Founder of Emily's Entourage, an innovative 501(c)3 foundation that accelerates research for new treatments and a cure for nonsense mutations of CF, describes her experience growing up with CF and the heart-shattering realization that she is a part of the approximately 10% of the CF community that is ineligible for CFTR modulators. She discusses the promise of science and innovation, each individual’s power to create transformative change, and the unique solidarity and commitment of the whole CF community to create a better future for everyone with CF. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 31, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
At CFRI's virtual Conference Awards Celebration on July 30, 2022, we honored these extraordinary individuals: Richard Moss, MD - Paul M. Quinton Cystic Fibrosis Research Legacy Award; Sonya Haggett, LCSW - CFRI Partners in Living Award In Memory of Anabel Stenzel; Anna Payne – Dave Stuckert Memorial Volunteer of the Year Award; Dennis Nielson, MD, PhD - Professional of the Year Award.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Janet Woodcock, Principal Deputy Commissioner of the US Food and Drug Administration, delivered Keynote Remarks at the opening of CFRI’s 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Manu Jain, Professor of Medicine and Pediatrics at Northwestern University’s Feinberg School of Medicine and Director of the Adult CF Program at Northwestern, presents a comprehensive overview on mRNA therapy for people with cystic fibrosis, a mutation-agnostic treatment that could work for any person with CF regardless of their CFTR mutation. Dr. Jain provides an update on the principles behind mRNA therapy, the hurdles it faces to become a viable treatment option, and the various programs in clinical development. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Paul McCray, Professor of Pediatrics, Division of Pulmonary Medicine, and Professor of Microbiology and Immunology at the University of Iowa, presents an overview on advances in gene therapy for cystic fibrosis, with a focus on gene therapy for lung disease treatment and prevention. Dr. McCray explores the different gene addition and gene editing strategies under investigation and reviews the challenges of delivery to the lung. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Emily Kramer-Golinkoff, an adult with cystic fibrosis and the Co-Founder of Emily's Entourage, an innovative 501(c)3 foundation that accelerates research for new treatments and a cure for nonsense mutations of CF, describes her experience growing up with CF and the heart-shattering realization that she is a part of the approximately 10% of the CF community that is ineligible for CFTR modulators. She discusses the promise of science and innovation, each individual’s power to create transformative change, and the unique solidarity and commitment of the whole CF community to create a better future for everyone with CF. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 31, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
In this moving and informative podcast, a personal overview of life with CF in Pakistan is shared by those who live with and treat the disease. Meet two women from Pakistan who share the lack of therapies they have available to treat their disease, and from Dr. Ali Akbar, a pulmonologist in the UK who is working to raise awareness and access to care in his native Pakistan.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
In part 2 of this inspiring podcast, the athletes with CF, all of whom have received double lung transplants, share more about their experiences participating in the Transplant Games. Hear their perspectives on self-care, motivation, and survivor’s guilt. These games provide transplant recipients a chance to honor their donors and demonstrate what their gift means to them. The Transplant games brings out the best in everyone and serves to increase awareness for organ donation. Watch and be inspired!
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
In this inspiring podcast, meet several phenomenal athletes with CF, all of whom have received double lung transplants, who share their experiences participating in the Transplant Games. These games provide transplant recipients to honor their donors and demonstrate what their gift means to them. The Transplant games bring out the best in everyone. Watch and be inspired!
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
In this webinar, recorded on August 23, 2022, Diane Shader Smith, director Will Battersby, and medical ethnographer Rebecca Mueller, PhD, met online for a dynamic discussion about the impact of the documentary film, Salt In My Soul. How has the film impacted viewers globally? What has been its broader impact upon antimicrobial resistance research and awareness? After a roundtable discussion, questions from the audience were answered.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
Dr. Sriram Vaidyanathan, a postdoctoral scholar at the Porteus lab at Stanford University, presents results from CFRI-funded research on identifying biomaterials that enable the transplantation of gene corrected airway stem cells to treat CF. He presents findings from experiments transplanting upper airway basal stem cells into immunocompromised mice using fibrinogen-based scaffolds. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Christine Hachem, Professor of Medicine in the Division of Gastroenterology at Saint Louis University, presents an overview on GI cancers with cystic fibrosis. With improvements in therapies for CF, there has been an increase in GI cancers in people with CF, the most common of which is colorectal cancer. Dr. Hachem details the epidemiology, etiology and risk factors for GI cancers in CF, as well as current screening recommendations. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Stephen Aller, Associate Professor at the Department of Pharmacology and Toxicology at the University of Alabama at Birmingham, presents results from CFRI-funded research on the role of CFTR Arginine-933 in folding, gating and potentiator drug binding. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Sriram Vaidyanathan, a postdoctoral scholar at the Porteus lab at Stanford University, presents results from CFRI-funded research on identifying biomaterials that enable the transplantation of gene corrected airway stem cells to treat CF. He presents findings from experiments transplanting upper airway basal stem cells into immunocompromised mice using fibrinogen-based scaffolds. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Christine Hachem, Professor of Medicine in the Division of Gastroenterology at Saint Louis University, presents an overview on GI cancers with cystic fibrosis. With improvements in therapies for CF, there has been an increase in GI cancers in people with CF, the most common of which is colorectal cancer. Dr. Hachem details the epidemiology, etiology and risk factors for GI cancers in CF, as well as current screening recommendations. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Stephen Aller, Associate Professor at the Department of Pharmacology and Toxicology at the University of Birmingham in Alabama, presents results from CFRI-funded research on the role of CFTR Arginine-933 in folding, gating and potentiator drug binding. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
At Dr. Phan's conference presentation on complementary therapies (which can be viewed here) there was not enough time to address all questions, so Dr. Phan recorded a follow-up podcast to answer all the questions submitted by conference attendees.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
Dr. Naren G. Kumar, a postdoctoral research scholar at the University of California Berkeley, presents results from CFRI-funded research on characterizing the intracellular diversification of Pseudomonas aeruginosa in chronic lung infections. Findings from experiments suggest that P. aeruginosa undergoes adaptive phenotypic changes in response to the intracellular microenvironment that favor the development of antibiotic-resistant sub-populations. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 31, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Joseph M. Pilewski, Associate Professor of Medicine, Pediatrics, and Clinical and Translational Science at the University of Pittsburgh and Co-director of the Cystic Fibrosis Program at University of Pittsburgh Medical Center, presents on advances in lung transplantation for individuals with cystic fibrosis. His presentation provides an overview of the transplant process - from discussion of prognosis and referral to a transplant center, to transplant evaluation, to listing, transplant surgery and care after transplant – as well as criteria to be a transplant candidate, survival after transplant, and quality of life after transplant. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 31, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Dao Nguyen, Associate Professor of Medicine at McGill, Clinician Scientist at the Research Institute of the McGill University Health Centre, Physician in the Division of Respirology at the McGill University Health Centre and Founding Director of the McGill Antimicrobial Resistance Centre, reviews the recent advances in our understanding, diagnosis and treatment of CF airway infections, as well as the challenges and remaining questions. Her presentation gives an overview on different microbes, particularly bacteria, ways to diagnose infection, and how to determine whether to treat and what kinds of treatments there are. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 30, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Naren G. Kumar, a postdoctoral research scholar at the University of California Berkeley, presents results from CFRI-funded research on characterizing the intracellular diversification of Pseudomonas aeruginosa in chronic lung infections. Findings from experiments suggest that P. aeruginosa undergoes adaptive phenotypic changes in response to the intracellular microenvironment that favor the development of antibiotic-resistant sub-populations. This presentation was part of CFRI's Virtual 35th National CF Education Conference on July 31, 2022.
CFRI's 35th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Levi Johnson, Registered Dietician, fierce bull rider, and individual living with CF, gives a general overview of what inflammation is and how living with CF causes chronic inflammation. Learn simple ways to combat chronic inflammation by making a few small adjustments in your daily routine. Even a small change can have a big impact.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
In this first of CFRI’s series on Random Acts of Kindness, hear Julie Desch, MD, tell how three random acts of kindness changed her life’s trajectory and helped to fulfill her life’s passion. Keep an eye out on our social media and this podcast series for more good news and random acts of kindness, and let us know if you have a story you’d like to share.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
Tattoos represent an array of meaning in our community, from honoring strengths and perspectives, special dates and people, and acceptance and loss along the CF journey. In our latest video podcast, individuals share the personal stories behind their tattoos.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
Tattoos represent an array of meaning in our community, from honoring strengths and perspectives, special dates and people, and acceptance and loss along the CF journey. In our latest video podcast, individuals share the personal stories behind their tattoos.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
The risk of colon cancer for those with CF is extremely high; colonoscopies are our best tool for preventing this. In our latest video podcast, individuals share their personal tips and tricks for improving the colonoscopy experience.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
The risk of colon cancer for those with CF is extremely high; colonoscopies are our best tool for preventing this. In our latest video podcast, individuals share their personal tips and tricks for improving the colonoscopy experience.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
In this inspiring podcast, CF Vests 4 Life Executive Director Rod Spadinger is joined by Rabia Murtaza and Harini Seshadri to discuss the impact of this program which distributes donated vests and life-saving equipment to those with CF around the globe.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
In this inspiring podcast, CF Vests 4 Life Executive Director Rod Spadinger is joined by Rabia Murtaza and Harini Seshadri to discuss the impact of this program which distributes donated vests and life-saving equipment to those with CF around the globe.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
Many young adults with CF remain on their parents' health insurance plan through the age of 26. But what happens next? In this information-packed podcast, Beth Sufian, attorney, and Director of the Cystic Fibrosis Social Security Project, and the CF Legal Information Hotline, shares multiple strategies for maintaining insurance coverage past the age of 26.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
Many young adults with CF remain on their parents' health insurance plan through the age of 26. But what happens next? In this information-packed podcast, Beth Sufian, attorney, and Director of the Cystic Fibrosis Social Security Project, and the CF Legal Information Hotline, shares multiple strategies for maintaining insurance coverage past the age of 26.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.
Pets and animal companions give their humans unconditional love and acceptance. The CDC acknowledges that they are known to offer several health benefits: lowering people’s stress and anxiety levels, while providing opportunities to get outdoors and meet new people. In this podcast, members of the CF community talk about ways their pets support them in their CF journey.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
Sponsored by Vertex Pharmaceuticals, Chiesi USA, Viatris, Gilead Sciences, and Genentech.
Pets and animal companions give their humans unconditional love and acceptance. The CDC acknowledges that they are known to offer several health benefits: lowering people’s stress and anxiety levels, while providing opportunities to get outdoors and meet new people. In this podcast, members of the CF community talk about ways their pets support them in their CF journey.
If you watch this episode, please let us know what you think at https://www.surveymonkey.com/r/KGB7PKY
Sponsored by Vertex Pharmaceuticals, Chiesi USA, Viatris, Gilead Sciences, and Genentech.
Nicole Irizarry, DPT, provides insight into stress management from a physical therapy perspective. This is the last in a five-part interactive webinar series on various aspects of physical therapy. The session demonstrates exercises, so dress comfortably and get ready to move.
CFRI's CF Wellness Initiative is sponsored by Translate Bio, Viatris, Ionis Pharmaceuticals, Vertex Pharmaceuticals, and private donors.
Nicole Irizarry, DPT, provides demonstrations of exercises and stretching moves that are particularly important for people with CF. This is the fourth in a five-part interactive webinar series on various aspects of physical therapy. The session demonstrates exercises, so dress comfortably and get ready to move.
CFRI's CF Wellness Initiative is sponsored by Translate Bio, Viatris, Ionis Pharmaceuticals, Vertex Pharmaceuticals, and private donors.
Nicole Irizarry, DPT, provides demonstrations of techniques to address pain and issues triggered and/or exacerbated by poor posture. This is the third in a five-part interactive webinar series on various aspects of physical therapy. The session demonstrates exercises, so dress comfortably and get ready to move.
CFRI's CF Wellness Initiative is sponsored by Translate Bio, Viatris, Ionis Pharmaceuticals, Vertex Pharmaceuticals, and private donors.
CFRI, in partnership with the National Organization of African Americans with Cystic Fibrosis (NOAACF), hosted a live webinar featuring members of CFRI's CF Diversity and Inclusion Committee who shared their rare within rare experiences, including challenges faced and opportunities moving forward.
This event was made possible through support from Vertex Pharmaceuticals, Genentech, Gilead Sciences, and Chiesi USA.
Nicole Irizarry, DPT, provides demonstrations of techniques to address pelvic floor weakness and urinary incontinence. This is the second in a five-part interactive webinar series on various aspects of physical therapy. The session demonstrates exercises, so dress comfortably and get ready to move.
CFRI's CF Wellness Initiative is sponsored by Translate Bio, Viatris, Ionis Pharmaceuticals, Vertex Pharmaceuticals, and private donors.
CFRI works tirelessly to raise awareness of CF and advocate for access to quality care and therapies. The organization is committed to supporting innovative CF research to find a cure, while offering education and support programs to improve our community's health and quality of life. Watch and be inspired. Please join us in our efforts! www.cfri.org
Filmed and edited by Brandon Delgado.
This film was created through educational grants from Vertex Pharmaceuticals, Gilead Sciences, AbbVie, Ionis Pharmaceuticals, and Genentech.
CF impacts people of every race and ethnicity, including members of the African American, East Asian, South Asian and Hispanic/Latinx communities. Due to the misperception of CF as a disease impacting only those of European descent, many individuals go years without a diagnosis. In this moving film, CF community members share their experiences.
CFRI’s Faces of CF Diversity and Inclusion Program is sponsored by Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, and Genentech, with additional translation support provided by Genentech.
In this podcast, Anna Payne, 34 years old and living with cystic fibrosis, shares her harrowing journey as she battles stage-4 colon cancer. People with cystic fibrosis have 5 to 10 times the rates of colon cancer than the general population, and the GI symptoms that are a hallmark of CF often mask the symptoms of colon cancer. In sharing her story Anna hopes to motivate others with CF to seek earlier colonoscopies to prevent colon cancer. "This is my story," she says, "but it does not need to be yours."
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Viatris.
In this podcast, Anna Payne, 34 years old and living with cystic fibrosis, shares her harrowing journey as she battles stage-4 colon cancer. People with cystic fibrosis have 5 to 10 times the rates of colon cancer than the general population, and the GI symptoms that are a hallmark of CF often mask the symptoms of colon cancer. In sharing her story Anna hopes to motivate others with CF to seek earlier colonoscopies to prevent colon cancer. "This is my story," she says, "but it does not need to be yours."
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Viatris.
CF impacts people of every race and ethnicity, including members of the East Asian community, yet due to the misperception of CF as a disease impacting only those of European descent, many individuals go years without a diagnosis. In this moving film, CF community members share their experiences.
CFRI’s Faces of CF Diversity and Inclusion Program is sponsored by Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, and Genentech, with additional translation support provided by Genentech.
Since CFRI awarded its first CF research grant to the legendary Paul Quinton, PhD, in 1977, CFRI has provided over $10 million to support innovative research at medical and academic institutions across the United States. In this film, current and recently funded CF researchers share about their work, the importance of continued focus on CF research, and the role CFRI has played in furthering their scientific projects and the search for a CF cure.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Viatris.
Since CFRI awarded its first CF research grant to the legendary Paul Quinton, PhD, in 1977, CFRI has provided over $10 million to support innovative research at medical and academic institutions across the United States. In this film, current and recently funded CF researchers share about their work, the importance of continued focus on CF research, and the role CFRI has played in furthering their scientific projects and the search for a CF cure.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Viatris.
CF impacts people of every race and ethnicity, including members of the Hispanic/Latinx community, yet due to the misperception of CF as a disease impacting only those of European descent, many individuals go years without a diagnosis. In this moving film, CF community members share their experiences.
CFRI’s Faces of CF Diversity and Inclusion Program is sponsored by Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, and Genentech.
In this informative podcast, Beth Sufian, Director of the CF Legal Information Hotline and CF Social Security Project, discusses private insurance options, Medicaid and Medicare, and how to obtain coverage for the care you need.
NOTE: Beth recorded a podcast with CFRI last year specific to SSI/SSDI, which can be viewed at https://youtu.be/pXyeIhVa0G8
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Viatris, with additional support for this episode provided by Gilead Sciences.
In this informative podcast, Beth Sufian, Director of the CF Legal Information Hotline and CF Social Security Project, discusses private insurance options, Medicaid and Medicare, and how to obtain coverage for the care you need.
NOTE: Beth recorded a podcast with CFRI last year specific to SSI/SSDI, which can be viewed at https://youtu.be/pXyeIhVa0G8
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, and Viatris, with additional support for this episode provided by Gilead Sciences.
CF impacts people of every race and ethnicity, including African Americans, yet due to the misperception that the disease impacts only those of European descent, many individuals go years without a diagnosis. In this moving film, CF community members share their experiences, while Dr. Jennifer Taylor-Cousar updates us on the true diversity of our community.
CFRI’s Faces of CF Diversity and Inclusion Program is sponsored by Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, and Genentech.
CF impacts people of every race and ethnicity, including African Americans, yet due to the misperception that the disease impacts only those of European descent, many individuals go years without a diagnosis. In this moving film, CF community members share their experiences, while Dr. Jennifer Taylor-Cousar updates us on the true diversity of our community.
CFRI’s Faces of CF Diversity and Inclusion Program is sponsored by Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, and Genentech.
Nicole Irizzary, DPT, presents on back pain and what to do about it with particular focus on the CF community. This webinar, recorded on September 11, 2021, is the first in a five-part interactive webinar series on various aspects of physical therapy. The session incorporates exercises, so get ready to move.
CFRI's Wellness Initiative is sponsored by Translate Bio, Viatris, Ionis Pharmaceuticals, Vertex Pharmaceuticals, and private donors.
Nicole Irizzary, DPT, presents on back pain and what to do about it with particular focus on the CF community. This webinar, recorded on September 11, 2021, is the first in a five-part interactive webinar series on various aspects of physical therapy. The session incorporates exercises, so get ready to move.
CFRI's Wellness Initiative is sponsored by Translate Bio, Viatris, Ionis Pharmaceuticals, Vertex Pharmaceuticals, and private donors.
Dr. Kenichi Okuda, a Research Associate at Marsico Lung Institute at University of North Carolina at Chapel Hill, discusses his research to identify cell types that contribute CFTR expression and function along the proximal-distal axis of the normal human lung. The presentation describes the methods and results of his experiments as well as their potential impact on the development of precision medicine therapies for cystic fibrosis. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Kenichi Okuda, a Research Associate at Marsico Lung Institute at University of North Carolina at Chapel Hill, discusses his research to identify cell types that contribute CFTR expression and function along the proximal-distal axis of the normal human lung. The presentation describes the methods and results of his experiments as well as their potential impact on the development of precision medicine therapies for cystic fibrosis. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. D.B. Sanders, Associate Director of the CF Center at Riley Hospital for Children and an Associate Professor of Pediatrics at the Indiana University School of Medicine in Indianapolis, provides an overview of the benefits of CFTR modulators with respects to the frequency of pulmonary exacerbations and how the CF community is preparing to treat respiratory symptoms in this new era. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Forest Rohwer, a microbial ecologist and Professor of Biology at San Diego State University, discusses current research on traditional phage therapy as well as modified phage called tailocins, to create personalized treatments for CF lung infections. The presentation describes laboratory protocols for isolating and purifying these biologicals, as well as the progress in regulatory and clinical treatment protocols. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Gunnar Esiason describes his journey with cystic fibrosis from childhood to a newly minted M.B.A. After being near end-stage ilness in 2018, Gunnar enrolled in a pivotal clinical trial that saved his life. Gunnar’s eyes have turned to the future of CF, where the next generation of patients will not have to grow up with the same disruptions as Gunnar and patients in his generation. This presentation was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Angela Garinis, Assistant Professor at the Oregon Hearing Research Center at Oregon Health & Science University, and Dr. Ahmet Uluer, Director of the Adult Cystic Fibrosis Program at the combined Boston Children’s Hospital and Brigham & Women’s Hospital Adult Cystic Fibrosis Center, discuss the pathogenesis of CF with focus on the microbiome and use of ototoxic treatments; synergistic ototoxic effects (e.g., noise, inflammation, other treatments) and ototoxicity monitoring and management options for CF care centers. They also briefly discuss novel clinical ototherapeutic trials. This presentation was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
At CFRI's virtual Conference Awards Celebration on July 31, 2021, we honored these extraordinary individuals: Jonathan Widdicombe, PhD - Paul M. Quinton Cystic Fibrosis Research Legacy Award; Jacob Fraker, MSW - CFRI Partners in Living Award In Memory of Anabel Stenzel; Marina Gonzales – Dave Stuckert Memorial Volunteer of the Year Award; Yelizaveta Sher, MD, FACLP - Professional of the Year Award.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Amir Moheet, Associate Professor in the Division of Endocrinology, Diabetes and Metabolism at University of Minnesota, gives an overview of the current option for insulin pumps, continuous glucose monitoring (CGM) and hybrid closed loop insulin. He reviews existing literature on the use of these technologies and their potential benefits in the management of CFRD. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. D.B. Sanders, Associate Director of the CF Center at Riley Hospital for Children and an Associate Professor of Pediatrics at the Indiana University School of Medicine in Indianapolis, provides an overview of the benefits of CFTR modulators with respects to the frequency of pulmonary exacerbations and how the CF community is preparing to treat respiratory symptoms in this new era. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Forest Rohwer, a microbial ecologist and Professor of Biology at San Diego State University, discusses current research on traditional phage therapy as well as modified phage called tailocins, to create personalized treatments for CF lung infections. The presentation describes laboratory protocols for isolating and purifying these biologicals, as well as the progress in regulatory and clinical treatment protocols. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Gunnar Esiason describes his journey with cystic fibrosis from childhood to a newly minted M.B.A. After being near end-stage ilness in 2018, Gunnar enrolled in a pivotal clinical trial that saved his life. Gunnar’s eyes have turned to the future of CF, where the next generation of patients will not have to grow up with the same disruptions as Gunnar and patients in his generation. This presentation was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Angela Garinis, Assistant Professor at the Oregon Hearing Research Center at Oregon Health & Science University, and Dr. Ahmet Uluer, Director of the Adult Cystic Fibrosis Program at the combined Boston Children’s Hospital and Brigham & Women’s Hospital Adult Cystic Fibrosis Center, discuss the pathogenesis of CF with focus on the microbiome and use of ototoxic treatments; synergistic ototoxic effects (e.g., noise, inflammation, other treatments) and ototoxicity monitoring and management options for CF care centers. They also briefly discuss novel clinical ototherapeutic trials. This presentation was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
At CFRI's virtual Conference Awards Celebration on July 31, 2021, we honored these extraordinary individuals: Jonathan Widdicombe, PhD - Paul M. Quinton Cystic Fibrosis Research Legacy Award; Jacob Fraker, MSW - CFRI Partners in Living Award In Memory of Anabel Stenzel; Marina Gonzales – Dave Stuckert Memorial Volunteer of the Year Award; Yelizaveta Sher, MD, FACLP - Professional of the Year Award.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Amir Moheet, Associate Professor in the Division of Endocrinology, Diabetes and Metabolism at University of Minnesota, gives an overview of the current option for insulin pumps, continuous glucose monitoring (CGM) and hybrid closed loop insulin. He reviews existing literature on the use of these technologies and their potential benefits in the management of CFRD. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Life interviews offer an opportunity for people to reflect on their lives and shape their stories, regardless of age or health. In this workshop, award-winning author Maryanne O’Hara (author of Little Matches) shares how to author one's own legacy or that of a loved one, while sharing practical tips on language and framing. Maryanne is a certified end-of-life-doula, whose work is inspired by the loss of her daughter to CF.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, and Viatris.
Life interviews offer an opportunity for people to reflect on their lives and shape their stories, regardless of age or health. In this workshop, award-winning author Maryanne O’Hara (author of Little Matches) shares how to author one's own legacy or that of a loved one, while sharing practical tips on language and framing. Maryanne is a certified end-of-life-doula, whose work is inspired by the loss of her daughter to CF.
If you listen to this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, and Viatris.
Jeanie Hanley, MD, moderates a panel discussion on "Breath From Salt" by Bijal Trivedi. They are joined by Isabel Stenzel Byrnes, LCSW, MPH, Paul Quinton, PhD, and Jeffrey Wine, PhD, who provide personal and professional insights into life with CF and the history of the search for a CF cure. This panel was part of CFRI's Virtual 34th National CF Education Conference on July 30, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Bijal Trivedi, Senior Science Editor at the National Geographic and award-winning journalist specializing in narrative features about biology, medicine and health, talks about her book “Breath from Salt: A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever.” presents on strength training for individuals with CF and its role as foundational support for physical activity and fitness sustainability. She gives insight into her decade-long journey writing this book, some of the people who inspired her, and shares a few excerpts that were particularly moving to report. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 30, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Meg Dvorak, LCSW, moderates a panel discussion with CF adults on CF and Body Image. Georgia Brown, MLA, Danielle Mandella, and Dominic Quagliozzi, MFA, give personal insight into how CF is affecting their body image, including self-esteem and mental health, the impact of scars, and changes in appearance with Trikafta. This panel was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Taylor Lewis, Clinical Exercise Physiologist and Pulmonary Exercise Researcher, presents on strength training for individuals with CF and its role as foundational support for physical activity and fitness sustainability. He explains why paralleling strength training with conditioning-based training programs is key to improving and sustaining exercise capacity and functional fitness performance levels in CF. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Jeanie Hanley, MD, moderates a panel discussion on "Breath From Salt" by Bijal Trivedi. They are joined by Isabel Stenzel Byrnes, LCSW, MPH, Paul Quinton, PhD, and Jeffrey Wine, PhD, who provide personal and professional insights into life with CF and the history of the search for a CF cure. This panel was part of CFRI's Virtual 34th National CF Education Conference on July 30, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Bijal Trivedi, Senior Science Editor at the National Geographic and award-winning journalist specializing in narrative features about biology, medicine and health, talks about her book "Breath from Salt: A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever.†presents on strength training for individuals with CF and its role as foundational support for physical activity and fitness sustainability. She gives insight into her decade-long journey writing this book, some of the people who inspired her, and shares a few excerpts that were particularly moving to report. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 30, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Meg Dvorak, LCSW, moderates a panel discussion with CF adults on CF and Body Image. Georgia Brown, MLA, Danielle Mandella, and Dominic Quagliozzi, MFA, give personal insight into how CF is affecting their body image, including self-esteem and mental health, the impact of scars, and changes in appearance with Trikafta. This panel was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Taylor Lewis, Clinical Exercise Physiologist and Pulmonary Exercise Researcher, presents on strength training for individuals with CF and its role as foundational support for physical activity and fitness sustainability. He explains why paralleling strength training with conditioning-based training programs is key to improving and sustaining exercise capacity and functional fitness performance levels in CF. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
It is estimated that over 25% of CF community members face food insecurity. In this webinar, recorded on Wednesday, September 1, a panel of personal and professional experts will discuss this issue, while sharing tips and resources for individuals facing this challenge. Hear from Georgia Brown, SNAP participant who lives with CF, Tiffany Raffino, LCSW, CF social worker at UCSF, and Katherine Jacobs, MPH, RDN, of the Food Research and Action Center for an engaging discussion, with Q and A from the audience.
Click here to view Tiffany Raffino's slides: https://www.cfri.org/wp-content/uploads/2021/09/Food-Security-Tiffany-Raffino.pdf
Click here to view Katherine Jacobs' slides: https://www.cfri.org/wp-content/uploads/2021/09/CFRI-Podcast_Food-Insecurity-Katherine-Jacobs.pdf
Click here to let us know what you think of this podcast:
https://www.surveymonkey.com/r/TMRP766
CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, and Viatris.
It is estimated that over 25% of CF community members face food insecurity. In this webinar, recorded on Wednesday, September 1, a panel of personal and professional experts will discuss this issue, while sharing tips and resources for individuals facing this challenge. Hear from Georgia Brown, SNAP participant who lives with CF, Tiffany Raffino, LCSW, CF social worker at UCSF, and Katherine Jacobs, MPH, RDN, of the Food Research and Action Center for an engaging discussion, with Q and A from the audience.
Click here to view Tiffany Raffino's slides: https://www.cfri.org/wp-content/uploads/2021/09/Food-Security-Tiffany-Raffino.pdf
Click here to view Katherine Jacobs' slides: https://www.cfri.org/wp-content/uploads/2021/09/CFRI-Podcast_Food-Insecurity-Katherine-Jacobs.pdf
Click here to let us know what you think of this podcast:
https://www.surveymonkey.com/r/TMRP766
CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, and Viatris.
Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and retired Director of the Stanford Cystic Fibrosis Center, answers follow-up questions on his presentation "Getting to the After Times: CF and COVID in Year 2" at CFRI's 34th National CF Education Conference. The Q&A was recorded on August 6, 2021.
Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and retired Director of the Stanford Cystic Fibrosis Center, answers follow-up questions on his presentation "Getting to the After Times: CF and COVID in Year 2" at CFRI's 34th National CF Education Conference. The Q&A was recorded on August 6, 2021.
Dr. Xiaopeng Li, Associate Professor in the Department of Pediatrics and Human Development in the College of Human Medicine at Michigan State University, presents research on impaired mucociliary transport and a lower airway-surface liquid (ASL) pH in CF small airways, and potential novel therapeutic target for small airways diseases. This presentation was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Keehoon Lee, a postdoctoral scholar at the Pathogen and Microbiome Institute at Northern Arizona University, presents research on the microbial composition of upper and lower CF airways in patients with chronic rhinosinusitis. He highlights the relationship between microbiome composition and host response, such as specific gene expressions and their functions in disease control. This presentation was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Steven Freedman, Director of the Pancreas Center at Beth Israel Deaconess Medical Center, Chief of the Division of Translational Research, and Professor of Medicine at Harvard Medical School, highlights the multiple GI manifestations that accompany cystic fibrosis. The presentation also discusses current trials and efforts to create best practice guidelines for clinicians. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Benjamin Chan, an Associate Research Scientist in the Department of Ecology and Evolutionary Biology at Yale University, and Dr. Jon Koff, Director of the Adult Cystic Fibrosis Program at Yale University, give a comprehensive overview on recent progress in phage therapy as a treatment for CF, including the development of a clinical trial to investigate the safety and efficacy of a nebulized personalized phage therapy approach and the establishment of a Center for Bacteriophage Research and Therapy at Yale. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Xiaopeng Li, Associate Professor in the Department of Pediatrics and Human Development in the College of Human Medicine at Michigan State University, presents research on impaired mucociliary transport and a lower airway-surface liquid (ASL) pH in CF small airways, and potential novel therapeutic target for small airways diseases. This presentation was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Keehoon Lee, a postdoctoral scholar at the Pathogen and Microbiome Institute at Northern Arizona University, presents research on the microbial composition of upper and lower CF airways in patients with chronic rhinosinusitis. He highlights the relationship between microbiome composition and host response, such as specific gene expressions and their functions in disease control. This presentation was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Steven Freedman, Director of the Pancreas Center at Beth Israel Deaconess Medical Center, Chief of the Division of Translational Research, and Professor of Medicine at Harvard Medical School, highlights the multiple GI manifestations that accompany cystic fibrosis. The presentation also discusses current trials and efforts to create best practice guidelines for clinicians. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Benjamin Chan, an Associate Research Scientist in the Department of Ecology and Evolutionary Biology at Yale University, and Dr. Jon Koff, Director of the Adult Cystic Fibrosis Program at Yale University, give a comprehensive overview on recent progress in phage therapy as a treatment for CF, including the development of a clinical trial to investigate the safety and efficacy of a nebulized personalized phage therapy approach and the establishment of a Center for Bacteriophage Research and Therapy at Yale. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Raksha Jain, Associate Professor of Pulmonary and Critical Care Medicine and Director of the Adult CF Care Center at the University of Texas Southwestern in Dallas, answers follow-up questions on her presentation "Reproductive Health in Men and Women with CF" at CFRI's 34th National CF Education Conference. The Q&A was recorded on August 6, 2021.
Dr. Raksha Jain, Associate Professor of Pulmonary and Critical Care Medicine and Director of the Adult CF Care Center at the University of Texas Southwestern in Dallas, highlights what is known and unknown about male and female infertility in CF, contraception and its impact on health in CF, as well as pregnancy, lactation and parenthood for men and women with CF. The presentation also discusses the impact of highly effective CFTR modulators. This presentation was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Deepika Polineni, Assistant Professor of Internal Medicine at the University of Kansas Health System and Associate Adult Program Director for the University of Kansas CF Care Center, provides a comprehensive review of mRNA as a novel therapeutic option for people with CF of all mutation types, and explains the difference between mRNA therapy and gene editing/ gene therapy. Results of the most recent clinical trials evaluating mRNA therapy in CF are also discussed. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Diane Shader Smith, Maryanne O'Hara and David Weill, will speak for the patient, the parent, and the provider respectively, and address the importance of memoir in medicine in the context of cystic fibrosis. Using David’s memoir, Exhale: Hope Healing and a Life in Transplant, Maryanne’s memoir, Little Matches: A Memoir of Grief and Light, and Mallory Smith’s memoir, Salt in My Soul: An Unfinished Life, they will discuss the role of narrative in medicine as it relates to the parent-provider relationship, bioethical issues affecting both privileged and underserved communities, systemic failings, scientific inquiry, and the role of palliative care from the time of diagnosis until end of life. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and retired Director of the Stanford Cystic Fibrosis Center, gives an update on key aspects of the pandemic currently relevant to CF: vulnerability to COVID in the CF community, transmission, vaccine availability and safety, breakthrough infections, variants, special issues for the immunocompromised, and more. Dr. Moss reviews current evidence and recommendations, and gives a global outlook. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Raksha Jain, Associate Professor of Pulmonary and Critical Care Medicine and Director of the Adult CF Care Center at the University of Texas Southwestern in Dallas, answers follow-up questions on her presentation "Reproductive Health in Men and Women with CF" at CFRI's 34th National CF Education Conference. The Q&A was recorded on August 6, 2021.
Dr. Raksha Jain, Associate Professor of Pulmonary and Critical Care Medicine and Director of the Adult CF Care Center at the University of Texas Southwestern in Dallas, highlights what is known and unknown about male and female infertility in CF, contraception and its impact on health in CF, as well as pregnancy, lactation and parenthood for men and women with CF. The presentation also discusses the impact of highly effective CFTR modulators. This presentation was part of CFRI's Virtual 34th National CF Education Conference on August 1, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Deepika Polineni, Assistant Professor of Internal Medicine at the University of Kansas Health System and Associate Adult Program Director for the University of Kansas CF Care Center, provides a comprehensive review of mRNA as a novel therapeutic option for people with CF of all mutation types, and explains the difference between mRNA therapy and gene editing/ gene therapy. Results of the most recent clinical trials evaluating mRNA therapy in CF are also discussed. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Diane Shader Smith, Maryanne O'Hara and David Weill, will speak for the patient, the parent, and the provider respectively, and address the importance of memoir in medicine in the context of cystic fibrosis. Using David’s memoir, Exhale: Hope Healing and a Life in Transplant, Maryanne’s memoir, Little Matches: A Memoir of Grief and Light, and Mallory Smith’s memoir, Salt in My Soul: An Unfinished Life, they will discuss the role of narrative in medicine as it relates to the parent-provider relationship, bioethical issues affecting both privileged and underserved communities, systemic failings, scientific inquiry, and the role of palliative care from the time of diagnosis until end of life. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Dr. Rick Moss, Professor Emeritus of Pediatrics at Stanford University and retired Director of the Stanford Cystic Fibrosis Center, gives an update on key aspects of the pandemic currently relevant to CF: vulnerability to COVID in the CF community, transmission, vaccine availability and safety, breakthrough infections, variants, special considerations for the immunocompromised, and more. Dr. Moss reviews current evidence and recommendations, and gives a global outlook. This presentation was part of CFRI's Virtual 34th National CF Education Conference on July 31, 2021.
CFRI's 34th National CF Education Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
CFRI's 34 National Cystic Fibrosis Education Conference - "Illuminating the CF Journey" - took place virtually from July 30 to August 1, 2021. Francis Collins, MD, PhD, Director of the National Institutes of Health (NIH), delivered this welcoming address to the CF community via video.
The Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
CFRI's 34 National Cystic Fibrosis Education Conference - "Illuminating the CF Journey" - took place virtually from July 30 to August 1, 2021. Francis Collins, MD, PhD, Director of the National Institutes of Health (NIH), delivered this welcoming address to the CF community via video.
The Conference was sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA, AbbVie, and Ionis Pharmaceuticals.
Members of the cystic fibrosis and LGBTQIA community share their experiences and perspectives on life with CF, the challenges and deep rewards of coming out, and the importance of finding community. Pride Month is in June; Pride is year round.
Sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, Gilead Sciences, and Viatris.
Film edited by Brandon Delgado.
Members of the cystic fibrosis and LGBTQIA community share their experiences and perspectives on life with CF, the challenges and deep rewards of coming out, and the importance of finding community. Pride Month is in June; Pride is year round.
Sponsored by Vertex Pharmaceuticals, Genentech, Chiesi USA, Gilead Sciences, and Viatris.
Film edited by Brandon Delgado.
In this informative podcast, Dr. Sriram Vaidyanathan discusses the incidence of cystic fibrosis among the Asian community, and research which indicates that CF incidence rates are far higher among South Asians than East Asians. Thanks to research conducted at Stanford, there is further evidence of the diversity of the cystic fibrosis community and the need for greater awareness among underrepresented communities and the medical community.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
CF Community Voices is sponsored by Chiesi USA, Genentech, Viatris, Gilead Sciences and Vertex Pharmaceuticals.
Edited by Brandon Delgado.
In this informative podcast, Dr. Sriram Vaidyanathan discusses the incidence of cystic fibrosis among the Asian community, and research which indicates that CF incidence rates are far higher among South Asians than East Asians. Thanks to research conducted at Stanford, there is further evidence of the diversity of the cystic fibrosis community and the need for greater awareness among underrepresented communities and the medical community.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
CF Community Voices is sponsored by Chiesi USA, Genentech, Viatris, Gilead Sciences and Vertex Pharmaceuticals.
Edited by Brandon Delgado.
David Weill, MD, formerly the director of Stanford's lung transplant program, discusses his insightful memoir, which presents an inside look at the world of high-stakes medicine and his recognition that he needed to step away from the front lines. Dr. Weill shares select readings from the book and responds to many viewer questions.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
Sponsored by Chiesi USA, Viatris, Genentech, Gilead Sciences, and Vertex Pharmaceuticals.
David Weill, MD, formerly the director of Stanford's lung transplant program, discusses his insightful memoir, which presents an inside look at the world of high-stakes medicine and his recognition that he needed to step away from the front lines. Dr. Weill shares select readings from the book and responds to many viewer questions.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
Sponsored by Chiesi USA, Viatris, Genentech, Gilead Sciences, and Vertex Pharmaceuticals.
Cystic fibrosis impacts people of all races and ethnicities. While more common among people of European descent, it is estimated that 1 in 10,000 people of South Asian origin have CF, while exponentially more are carriers. Due to the misperception that CF does not occur within the South Asian community, misdiagnoses and late diagnoses are common. In this film, members of CFRI's community share their experiences and expertise to raise vital CF awareness.
Part of CFRI’s Faces of CF ~ Diversity and Inclusion Program, this film was made possible through grants from Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, and Genentech.
Film produced by Brandon Delgado.
Cystic fibrosis impacts people of all races and ethnicities. While more common among people of European descent, it is estimated that 1 in 10,000 people of South Asian origin have CF, while exponentially more are carriers. Due to the misperception that CF does not occur within the South Asian community, misdiagnoses and late diagnoses are common. In this film, members of CFRI's community share their experiences and expertise to raise vital CF awareness.
Part of CFRI’s Faces of CF ~ Diversity and Inclusion Program, this film was made possible through grants from Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, and Genentech.
Film produced by Brandon Delgado.
In this latest Q and A session, Rick Moss, MD, addresses questions related to vaccines, the recent CDC announcement regarding mask wearing, and what activities the CF community can feel safer participating in. This 15th podcast with Dr. Moss was recorded May 13, 2021.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
Thanks to our sponsors, Vertex Pharmaceuticals, Chiesi USA, Genentech, Viatris, and Gilead Sciences.
In this latest Q and A session, Rick Moss, MD, addresses questions related to vaccines, the recent CDC announcement regarding mask wearing, and what activities the CF community can feel safer participating in. This 15th podcast with Dr. Moss was recorded May 13, 2021.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
Thanks to our sponsors, Vertex Pharmaceuticals, Chiesi USA, Genentech, Viatris, and Gilead Sciences.
Ashley Ballou Bonnema, professional vocalist, founder and executive director of the nonprofit Breathe Bravely, and adult with cystic fibrosis, discusses the organization's flagship program, sINgSPIRE. This innovative approach to battling CF through the art of singing has inspired countless individuals with CF to find their voice. This is part-two of a two-part podcast. In this, part two, Ashley shares the incredible impact this program has had across the country and globe. Watch and be inspired to sing.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.
Ashley Ballou Bonnema, professional vocalist, founder and executive director of the nonprofit Breathe Bravely, and adult with cystic fibrosis, discusses the organization's flagship program, sINgSPIRE. This innovative approach to battling CF through the art of singing has inspired countless individuals with CF to find their voice. This is part-two of a two-part podcast. In this, part two, Ashley shares the incredible impact this program has had across the country and globe. Watch and be inspired to sing.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.
Ashley Ballou Bonnema, is a professional vocalist from Sioux Falls, South Dakota, head of a private voice studio, and founder and executive director of Breathe Bravely – a nonprofit organization dedicated to giving voice to cystic fibrosis. As an adult with CF, Ashley is a passionate advocate for our community. She created Breathe Bravely’s flagship program, sINgSPIRE, an innovative approach to contending with CF through the art of singing. This is a two-part podcast. In this, part one, Ashley shares her very personal, very moving story of life with CF, and how singing saved her life.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.
Ashley Ballou Bonnema, is a professional vocalist from Sioux Falls, South Dakota, head of a private voice studio, and founder and executive director of Breathe Bravely – a nonprofit organization dedicated to giving voice to cystic fibrosis. As an adult with CF, Ashley is a passionate advocate for our community. She created Breathe Bravely’s flagship program, sINgSPIRE, an innovative approach to contending with CF through the art of singing. This is a two-part podcast. In this, part one, Ashley shares her very personal, very moving story of life with CF, and how singing saved her life.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.
Leah Webb, Certified Health Coach, author, and mother of two children - one with cystic fibrosis, and one with food allergies - shares her passion for healthy eating, and its direct impact on health. She is the author of "The Grain-Free, Sugar-Free, Dairy-Free Family Cookbook: Simple and Delicious Recipes for Cooking with Whole Foods on a Restrictive Diet." She focuses on increasing nutrient dense foods while sharing strategies for making shifts toward a healthier mindset and body.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.
Leah Webb, Certified Health Coach, author, and mother of two children - one with cystic fibrosis, and one with food allergies - shares her passion for healthy eating, and its direct impact on health. She is the author of "The Grain-Free, Sugar-Free, Dairy-Free Family Cookbook: Simple and Delicious Recipes for Cooking with Whole Foods on a Restrictive Diet." She focuses on increasing nutrient dense foods while sharing strategies for making shifts toward a healthier mindset and body.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.
Melissa Tumblin, Executive Director of the Ear Community Organization, discusses Ally's Act - federal legislation that has been introduced in 2021 to improve hearing health care for those needing cochlear implants or bone anchored hearing aids. As hearing loss is not uncommon for members of the CF community due to frequent aminoglycoside use, this legislation is relevant for many.
Melissa Tumblin, Executive Director of the Ear Community Organization, discusses Ally's Act - federal legislation that has been introduced in 2021 to improve hearing health care for those needing cochlear implants or bone anchored hearing aids. As hearing loss is not uncommon for members of the CF community due to frequent aminoglycoside use, this legislation is relevant for many.
Ototoxicity impacts many people with cystic fibrosis due to the use of aminoglycosides to treat recurring lung infections. In this two-part webinar, three experts discuss this challenging condition: Ahmet Uluer, DO, MPH, Director of the Adult CF Program at Boston Children's Hospital and Brigham and Women’s Hospital; Angela Garinis, PhD, Audiologist at Oregon Health and Science University; Michael Doing, AuD, audiologist at the University of South Florida, and an adult with cystic fibrosis. In Part 2, they discuss ototoxicity screening and prevention, the management of ototoxicity and future treatments and clinical trials in progress.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.
Ototoxicity impacts many people with cystic fibrosis due to the use of aminoglycosides to treat lung infections. In this two-part webinar, three experts discuss this challenging condition: Ahmet Uluer, DO, MPH, Director of the Adult CF Program at Boston Children's Hospital and Brigham and Women’s Hospital; Angela Garinis, PhD, Audiologist at Oregon Health and Science University; Michael Doing, AuD, audiologist at the University of South Florida, and an adult with cystic fibrosis. In Part 1, they discuss the pathogenesis of CF and hearing loss, causes of and screening for ototoxicity.
If you watch this podcast episode, please let us know what you think at: https://www.surveymonkey.com/r/TMRP766
Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.
Ototoxicity impacts many people with cystic fibrosis due to the use of aminoglycosides to treat recurring lung infections. In this two-part webinar, three experts discuss this challenging condition: Ahmet Uluer, DO, MPH, Director of the Adult CF Program at Boston Children's Hospital and Brigham and Women’s Hospital; Angela Garinis, PhD, Audiologist at Oregon Health and Science University; Michael Doing, AuD, audiologist at the University of South Florida, and an adult with cystic fibrosis. In Part 2, they discuss ototoxicity screening and prevention, the management of ototoxicity and future treatments and clinical trials in progress.
If you watch this podcast episode, please let us know what you think at https://www.surveymonkey.com/r/TMRP766
Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.
Ototoxicity impacts many people with cystic fibrosis due to the use of aminoglycosides to treat lung infections. In this two-part webinar, three experts discuss this challenging condition: Ahmet Uluer, DO, MPH, Director of the Adult CF Program at Boston Children's Hospital and Brigham and Women’s Hospital; Angela Garinis, PhD, Audiologist at Oregon Health and Science University; Michael Doing, AuD, audiologist at the University of South Florida, and an adult with cystic fibrosis. In Part 1, they discuss the pathogenesis of CF and hearing loss, causes of and screening for ototoxicity.
If you watch this podcast episode, please let us know what you think at: https://www.surveymonkey.com/r/TMRP766
Made possible with support from Vertex Pharmaceuticals, Chiesi USA, Viatris, Genentech and Gilead Sciences.
Weight gain has historically been an issue for many individuals with cystic fibrosis, and nutritional status and lung function are closely linked. Dr. Virginia Stallings, a nutrition pediatrician and professor of pediatrics at Children’s Hospital of Philadelphia and University of Pennsylvania Perelman School of Medicine has worked in nutrition clinical care and research for more than 30 years. Dr. Stallings designed and led the NIH-funded study on Encala™ for people with cystic fibrosis. In this podcast she discusses pancreatic insufficiency and the reasons for poor nutrient absorption among many with CF, and the results of the clinical trials with Encala in improving nutritional status.
CF Community Voices is made possible through grants from Vertex Pharmaceuticals, Genentech, Chiesi USA and Viatris.
Please help us evaluate our podcast by completing this quick survey: https://www.surveymonkey.com/r/TMRP766
Weight gain has historically been an issue for many individuals with cystic fibrosis, and nutritional status and lung function are closely linked. Dr. Virginia Stallings, a nutrition pediatrician and professor of pediatrics at Children’s Hospital of Philadelphia and University of Pennsylvania Perelman School of Medicine has worked in nutrition clinical care and research for more than 30 years. Dr. Stallings designed and led the NIH-funded study on Encala™ for people with cystic fibrosis. In this podcast she discusses pancreatic insufficiency and the reasons for poor nutrient absorption among many with CF, and the results of the clinical trials with Encala in improving nutritional status.
CF Community Voices is made possible through grants from Vertex Pharmaceuticals, Genentech, Chiesi USA and Viatris.
Please help us evaluate our podcast by completing this quick survey: https://www.surveymonkey.com/r/TMRP766
In this follow-up to Luanne McKinnon's inspiring and insightful podcast, CFRI's Siri Vaeth and Stacie Reveles ask Luanne – artist, writer, curator, woman with CF, and transplant recipient – questions from podcast viewers. Imagining the Impossible - Holding the Miracle took viewers from Luanne's childhood in Dallas, where she was diagnosed with CF in 1969, through her many fascinating adventures culminating in her life-changing transplant at Stanford nearly 10 years ago.
In this inspiring and insightful podcast, Luanne McKinnon – artist, writer, curator, woman with CF, and transplant recipient takes viewers from Luanne's childhood in Dallas, where she was diagnosed with CF in 1969, through her many fascinating global adventures, culminating in her life-changing transplant at Stanford nearly 10 years ago. Imagining the Impossible - Holding the Miracle provides life lessons for all.
CF Community Voices is made possible through grants from Vertex Pharmaceuticals, Genentech, Chiesi USA and Viatris.
Please help us evaluate our podcast by completing this quick survey: https://www.surveymonkey.com/r/TMRP766
In this follow-up to Luanne McKinnon's inspiring and insightful podcast, CFRI's Siri Vaeth and Stacie Reveles ask Luanne – artist, writer, curator, woman with CF, and transplant recipient – questions from podcast viewers. Imagining the Impossible - Holding the Miracle took viewers from Luanne's childhood in Dallas, where she was diagnosed with CF in 1969, through her many fascinating adventures culminating in her life-changing transplant at Stanford nearly 10 years ago.
In this inspiring and insightful podcast, Luanne McKinnon – artist, writer, curator, woman with CF, and transplant recipient takes viewers from Luanne's childhood in Dallas, where she was diagnosed with CF in 1969, through her many fascinating global adventures, culminating in her life-changing transplant at Stanford nearly 10 years ago. Imagining the Impossible - Holding the Miracle provides life lessons for all.
CF Community Voices is made possible through grants from Vertex Pharmaceuticals, Genentech, Chiesi USA and Viatris.
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Dr. Brigitte Gomperts, leads a lab at the Eli and Edythe Broad Center of Regenerative Medicine and Stem Cell Research at UCLA. Her research focuses on the role stem cells play in repairing and regenerating the lungs after injury; her lab was the first to use stem cells to create lung-like organoids that mimic the air sac structures of actual lungs that – among other things – are used for high-throughput drug screening, and which someday might lead to the generation of patient-specific transplantable lung tissue. CFRI endorses CA Proposition 14 to continue funding stem cell research. Dr. Gomperts’ work is an example of the vital research funded through the California Institute of Regenerative Medicine.
Recorded 10/26/2020
Rick Moss, MD, CF clinician and researcher at Stanford, answers CF and COVID-19-related questions submitted by our community over the past weeks related to testing, vaccine progress, returning to school and more. This most recent session was recorded on September 10, 2020.
We thank Vertex Pharmaceuticals, Gilead Sciences, Genentech, Chiesi USA, and Mylan Pharmaceuticals for their support of these podcasts.
On Tuesday July 21, 2020, CFRI hosted a webinar on Contraception in the Era of CFTR Modulators. Emily Godfrey, MD, MPH (University of Washington), Patricia Walker, MD (Mount Sinai Beth Israel, NY), Molly Pam and Laura Mentch (women with CF) discussed the epidemiology of unplanned pregnancy and contraceptive need among women with CF; how hormonal contraception may affect CF disease; and contraceptive considerations in the era of CFTR modulators.
CF Community Voices is sponsored by Vertex Pharmaceuticals, Genentech, Gilead Sciences, Chiesi USA and Mylan Pharmaceuticals.