Have You Herd? An IDF Podcast: Recent Episodes
Immune Deficiency Foundation
This podcast is a service of the Immune Deficiency Foundation, or IDF, a nonprofit organization dedicated to improving the diagnosis, treatment and quality of life of people diagnosed with primary immunodeficiency, or PI. People living with PI are the zebras of the medical world & the IDF community is one big zebra herd.
To learn more about primary immunodeficiency and the PI community, please visit the IDF website at www.primaryimmune.org. If you have any questions you would like to be answered, email us at idf@primaryimmune.org. Special thanks to Bryson Kemp for scoring this podcast! www.brysonkempmusic.com
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPTION%20YA%20voices%20conference.pdfIn June 2026, we interviewed young adults who attended the Immune Deficiency Foundation National Conference in San Antonio. Questions ranged in scope from joys and laughter to fears and worries.Your support of the Immune Deficiency Foundation makes content like this possible. To donate or volunteer, visit primaryimmune.org/donate.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of the Immune Deficiency Foundation, its Board of Trustees, sponsors, or donors.
Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20Long%20covid%20and%20PI.pdf Dr. Manish Butte (E. Richard Stiehm Endowed Chair, Professor, and Division Chief of Pediatric immunology at UCLA) provides an update on what's known (and unknown) about long COVID and primary immunodeficiency. View this webinar on YouTube: https://youtu.be/5xWTdxCudvA The information, terminology, and opinions presented in this forum do not necessarily reflect the views of the Immune Deficiency Foundation, its Board of Trustees, sponsors, or donors. Your support of the Immune Deficiency Foundation makes programming like this possible. Visit www.primaryimmune.org/donate to further our mission.
TRANSCRIPT: https://primaryimmune.org/sites/default/files/Transcript%20-%20Practice%20parameters.pdfOn this episode of the Immune Deficiency Foundation podcast, Dr. Paula Henao and Katherine Lontok, Ph.D. (the Foundation's medical director and director of science and policy communications, respectively) discuss the highly anticipated practice parameters for primary immunodeficiency, or inborn errors of immunity. The new parameters, intended to guide clinicians in diagnosis and treatment decisions, are more comprehensive and holistic than ever before, and include topics such as genetic testing, newborn screening, mental health management, and much more. 2025 practice parameters: https://college.acaai.org/review-the-2025-inborn-error-of-immunity-iei-practice-parameter/The information, terminology, and opinions presented in this forum do not necessarily reflect the views of the Immune Deficiency Foundation, its Board of Trustees, sponsors, or donors.Your support of the Immune Deficiency Foundation makes programming like this possible. Visit www.primaryimmune.org/donate to further our mission.
Transcript: https://primaryimmune.org/sites/default/files/Transcription%20-%20Art%20installations.pdfOn this episode of the Immune Deficiency Foundation Podcast, Tammy Black and Elizabeth Ferguson (the organization's chief communications officer and director of events, respectively) discuss the interactive art installations that will be featured at this year's National Conference. To see and help create these one-of-a-kind art pieces in person, you can join us June 25-27 in San Antonio! Visit https://primaryimmune.org/conference to register now.
Emma Mertens and Megan Messick discuss the Immune Deficiency Foundation's upcoming 2026 National Conference.Click here to register: https://web.cvent.com/event/098b166d-370c-4dda-b02e-f7d80d76a5c5/websitePage:190e3719-e947-4da1-8dc7-e18fd2abd955?environment=P2Your support of the Immune Deficiency Foundation makes our content and events possible. Click here to donate: https://primaryimmune.org/donateThe information, terminology, and opinions presented in this forum do not necessarily reflect the views of the Immune Deficiency Foundation, its Board of Trustees, sponsors, or donors.
TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Jorey%20and%20Paula.pdfOn this episode, CEO Jorey Berry sits down with the foundation's new medical director, Dr. Paula Henao to discuss her career, her new role, and the state of immunology. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of the Immune Deficiency Foundation, its Board of Trustees, sponsors, or donors.Your support of the Immune Deficiency Foundation makes programming like this possible. Visit https://www.primaryimmune.org/donate to further our mission.
) will be available for all to watch on YouTube, free of charge. To celebrate, this podcast episode will feature a panel discussion amongst cast members Kim and Ben Everett, Yvette and Jerry Shorten, Victoria Medl, Shane Brisson, Dionne Stalling, and Ironmouse, who performed the film's theme song. The discussion is led by our foundation's Board Chair, Tracy Shaw.You can watch a video of this panel here: https://youtu.be/qKBjZRSBrl0The information, terminology, and opinions presented in this forum do not necessarily reflect the views of the Immune Deficiency Foundation, its Board of Trustees, sponsors, or donors.Your support of the Immune Deficiency Foundation makes programming like this possible. Visit www.primaryimmune.org/donate to further our mission.
TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20Dermatological%20issues%20podcast.pdfDr. Alexandra Freeman and Dr. Heidi H. Kong discuss dermatological manifestations of primary immunodeficiency. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.Your support of the Immune Deficiency Foundation makes programming like this possible. Visit https://primaryimmune.org/donate to further our mission.To view a PDF of this presentation, click here: https://primaryimmune.org/sites/default/files/For%20WEB%20-%20IDF_DermTalkJan13.pdf
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20PI%20and%20oral%20health.pdfClick here to view a a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Oral_Health_Arce.pdfDr. Roger Arce provides a presentation on the links between primary immunodeficiency and oral health.Join us June 25-27 for the 2026 PI Conference in San Antonio, TX! www.primaryimmune.org/conference.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.Your support of the Immune Deficiency Foundation makes programming like this possible. Visit primaryimmune.org/donate to further our mission.
TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT.Undiagnosed.Reuben.pdfReuben Johnson was diagnosed with chronic granulomatous disease, or CGD, at the age of ten. So much of his story takes place after his family had found some of the answers that are often elusive for others. Reuben learned early in life that joy is essential and simple. However, he would soon have to confront the cruelty of sickness and the cold realities of a medical system that either didn't understand him or didn't care. These things formed a perfect storm in the center of his life that threatened to wash away the joy that once came so easily to him.Find Reuben and Sherri on LinkedIn: https://www.linkedin.com/in/flyduo/Your support of the Immune Deficiency Foundationhelps ensure that people like Reuben get the education, advocacy, and support theydeserve. To learn more about our mission and to donate, visit primaryimmune.org/donate.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Transcript: https://primaryimmune.org/sites/default/files/Transcription%20-%20PI%20and%20cancer.pdfDr. Charlotte Cunningham-Rundles provides a presentation on the link between primary immunodeficiency (PI) and cancer.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Job%20hunting%20with%20PI.pdfOn this episode of ChronicXTwenties, Myles Temple joins Chris Duckett (Director of human resources at the Immune Deficiency Foundation) to discuss the ins and outs of job hunting with primary immunodeficiency. Myles's website: www.mylestemple.comYour support of the Immune Deficiency Foundation helps us spread the word about primary immunodeficiency and those who live with it. To support our work, please donate at primaryimmune.org/donate.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20How%20FOXP3%20changed%20immunology.pdfDr. Troy Torgerson (Allen Institute for Immunology, Immune Deficiency Foundation Medical Advisory Committee) and Katherine Lontok (Director of Science and Policy Communications, Immune Deficiency Foundation) discuss the Nobel Prize-winning research of Mary Brunkow, Fred Ramsdell and Shimon Sakaguchi.Find Dr. Torgerson on LinkedIn: https://www.linkedin.com/in/troy-torgerson-44b6207/Your support of the Immune Deficiency Foundation helps us spread the word about primary immunodeficiency and those who live with it. To support our work, please donate at primaryimmune.org/donate.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20FOOD%20JUSTICE.pdfDr. Jennifer Oliver of Manna Movement Collaborative discusses food justice with Dr. Nicole. Topics include the language we use to discuss food scarcity, SNAP benefits, local food councils, and more. https://www.mannamovement.org/The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.To support the work of the Immune Deficiency Foundation, visit www.primaryimmune.org/donate.
Jocelyn Cooper (Program manager, Black Women's Health Imperative) and Holly Jones (Executive director, HERstory In Color) give a presentation on caregiving and chronic illness.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.---------------------------------------------------------------------------------------------------Inequities in the rare disease community: https://21259597.fs1.hubspotuserconte...RDDC Patient & caregiver advisory board interest form: https://docs.google.com/forms/d/e/1FA...HERStory in Color: https://herstoryincolor.org/IDF Caregiver compassion & connection guide: https://primaryimmune.org/resources/p...RDDC: https://www.rarediseasediversity.org/
TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Foundation%20Focus%20September%202025.pdfImmune Deficiency Foundation CEO Jorey Berry provides updates to the community for the month of September. Topics include Walk for PI, upcoming webinar events, the 2024 annual report, and the film Compromised: Life without immunity.
This conversation includes the topics of suicidal and self-harm ideation. We understand that not everyone is capable of hearing such conversations. Listener discretion is advised.TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20CX20%20Mental%20health%20and%20college%20roundtable%20.pdfOn this throwback episode of ChronicxTwenties, we revisit a roundtable from December 2023. Cassie Mummert, Darcy Gott, Ethan McGrew, Jesse McCall, Lance McCall, and Victoria Medl discuss how they navigate the stress of college, postgraduate studies, and mental wellness with primary immunodeficiency. In memory of Ethan McGrew.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Transcript: file:///E:/2025/Podcasts/CEO%20Updates/Transcript%20-%20FF%20Aug%202025.pdfCEO Jorey Berry provides an update for the month of August 2025. Topics include Walk for PI, resources for a new school year, and the 2026 National PI Conference.
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20HLH.pdfDr. Michael Jordan of Cincinnati Children's provides an overview of hemophagocytic lymphohistiocytosis (HLH).View a PDF of this presentation: https://primaryimmune.org/sites/default/files/v2%20FOR%20WEB%20HLH.pdfTo learn more, volunteer, or donate, visit primaryimmune.org/donate.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Dionne Stalling's 45-year diagnosis journey started with a mosquito bite. Her quest for answers took her through some of the unflinching truths of the healthcare system. This is her story.You can hear more of Dionne's story in the Immune Deficiency Foundation's new documentary, "Compromised: Life without immunity." Visit primaryimmune.org/compromised to register.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
President and CEO Jorey Berry provides an update for the month of July. Topics include new programming, Walk for PI, new resources, and our organization's statement regarding the passage of H.R.1 (OBBBA).This message was recorded prior to the incredible show of support by Ironmouse and her community.
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Bold%20Conversations%20-%20Misinformation.pdfCynthia Baur, PhD, is a health literacy and health communication expert focused on improving health literacy at the individual, family, community and organizational levels. She directs the University of Maryland Horowitz Center for Health Literacy, the nation's first academic health literacy center, and is a professor in the Department of Behavioral and Community Health. She joins Dr. Nicole for a conversation about misinformation, disinformation, what we've learned about combatting them.https://sph.umd.edu/research-impact/research-centers/horowitz-center-health-literacyTo donate, volunteer, or learn more about primary immunodeficiency, visit www.primaryimmune.org.
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Chronic%20Twenties%20Advocacy.pdfImmune Deficiency Foundation staff members Rebecca Russ (grassroots advocacy specialist) and Eric Feigen (regulatory affairs manager) provide insight on what advocacy is, its role in the greater PI community, and the power of young voices.Sign up for IDF action alerts to make your voice heard in just a few clicks! https://primaryimmune.org/get-involved/advocate/action-alerts
This program is presented with support from CSL Behring, Takeda, and Grifols.Read a transcript of this episode: file:///E:/2025/Podcasts/CEO%20Updates/Transcript%20-%20CEO%20Update%20June%2025.pdfImmune Deficiency Foundation CEO Jorey Berry discusses our new text message program, an upcoming Lunch & Learn, and an exciting new volunteer opportunity.
Transcript: https://primaryimmune.org/sites/default/files/APDS%20Lunch%20and%20Learn%20transcript.pdfDr. Jolan Walter (University of South Florida, Johns Hopkins All Children's Hospital) provides an explanation of genetic variants in APDS.View a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20APDS%20IDF%20Lunch%20and%20Learn_jw_toshare.pdf
Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20May%20CEO%20Update.pdfImmune Deficiency Foundation CEO Jorey Berry provides an update for the month of May, 2025.
Transcript: https://primaryimmune.org/sites/default/files/Transcript%20Shaker.pdfDr. Marcus Shaker is a professor of pediatrics in medicine at Dartmouth's Geisel School of Medicine. On this episode of the Immune Deficiency Foundation podcast, he joined staff members Angie Kotarski, community resource navigator, and Stephanie Steele, director of payor relations and policy to discuss prevalent issues surrounding insurance coverage for primary immunodeficiency patients. To donate, volunteer, or learn more about PI and the Immune Deficiency Foundation visit primaryimmune.org.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Transcript: https://primaryimmune.org/sites/default/files/April%20CEO%20Transcript.pdfImmune Deficiency Foundation president and CEO Jorey Berry provides updates to the PI community.
Transcript: https://primaryimmune.org/sites/default/files/Advocacy%20Day%20Training%20Transcript.pdfThis week, 150 advocates will represent the Immune Deficiency Foundation and the greater PI community on Capitol Hill in Washington, D.C. But what does that mean, exactly? Why is it important? And what are these volunteers responsible for? This episode of the Immune Deficiency Foundation podcast will give a special look behind the curtain to those interested in, but intimidated by, advocacy work on behalf of the PI community.
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Legislative%20webinar.pdfThis panel discussion features Immune Deficiency Foundation CEO Jorey Berry, as well as Chief Public Policy Officer Lynn Albizo, Community Resource Navigator Angie Kotarski, and Jodi Taub, owner of Jodi Taub Therapy, discuss the impact of recent federal policy changes on the PI community.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.LINKS:https://primaryimmune.org/get-involve...www.medicare.govwww.medicaid.govwww.healthcare.govwww.usa.gov/state-healthwww.naccho.org/membership/lhd-directoryhttps://www.kff.org/www.commonwealthfund.orgwww.accessiahealth.orgwww.patientadvocate.orgwww.triagehealth.orgwww.rarediseasediversity.org/rddc-get-involvedwww.patientsrising.orgwww.rarediseases.org/get-involved/
https://primaryimmune.org/sites/default/files/Bold%20Conversations%203.2%20Transcript.pdfIn this session from the 2024 PI Conference in Chicago, Dr. Nicole gave a very vulnerable talk about her experiences navigating the healthcare system, both as a physician and as a caregiver for her father. To learn more, volunteer, or donate, visit primaryimmune.org/donate.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Transcript: https://primaryimmune.org/sites/default/files/01PROOF%20transcription%20gene%20editing%20webinar.pdfView a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Gene%20editing.pdfSusan Prockop, MD of Boston Children's Hospital and Harvard Medical School provides an overview and recent updates to gene therapy research for primary immunodeficiency.To learn more, volunteer, or donate, visit primaryimmune.org/donate.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.LINKS: SCID-X1 Gene Therapy Via Intravenous Lentiviral (Ivlv-X1) Injection: https://clinicaltrials.gov/study/NCT03217617?term=NCT03217617&rank=1Phase I/II Trial of Lentiviral Gene Transfer for SCID-X1 with Low Dose Targeted Busulfan Conditioning: https://clinicaltrials.gov/study/NCT03311503?term=NCT03311503&rank=1Lentiviral Gene Transfer for Treatment of Children Older Than Two Years of Age With X-Linked Severe Combined Immunodeficiency (XSCID): https://clinicaltrials.gov/study/NCT01306019?term=NCT01306019&rank=1Pilot and Feasibility Study of Hematopoietic Stem Cell Gene Transfer for the Wiskott-Aldrich Syndrome: https://clinicaltrials.gov/study/NCT01410825?term=NCT01410825&rank=1Gene Therapy for WAS: https://clinicaltrials.gov/study/NCT01347346?term=NCT01347346&limit=10&rank=1Gene Therapy for Wiskott-Aldrich Syndrome (WAS): https://clinicaltrials.gov/study/NCT01347242?term=NCT01347242&limit=10&rank=1Study of Gene Therapy Using a Lentiviral Vector to Treat X-linked Chronic Granulomatous Disease: https://clinicaltrials.gov/study/NCT02234934?term=NCT02234934&limit=10&rank=1Gene Therapy for X-linked Chronic Granulomatous Disease (X-CGD) (CGD): https://clinicaltrials.gov/study/NCT01855685?term=NCT01855685&limit=10&rank=1pCCLCHIM-p47 (Lentiviral Vector Transduced CD34 Plus Cells) in Patients With p47 Autosomal Recessive Chronic Granulomatous Disease (AR-CGD): https://clinicaltrials.gov/study/NCT06253507?term=NCT06253507&limit=10&rank=1Lentiviral Gene Therapy for p47 AR-CGD: https://clinicaltrials.gov/study/NCT05207657?term=NCT05207657&limit=10&rank=1Base Editing for Mutation Repair in Hematopoietic Stem & Progenitor Cells for X-Linked Chronic Granulomatous Disease: https://clinicaltrials.gov/study/NCT06325709?term=NCT06325709&limit=10&rank=1A Study of the Safety and Efficacy of Prime Editing (PM359) in Participants with P47phox Autosomal Recessive Chronic Granulomatous Disease (CGD): https://clinicaltrials.gov/study/NCT06559176?term=NCT06559176&limit=10&rank=1
Immune Deficiency Foundation CEO Jorey Berry provides an overview of updates for the community in March 2025.
Transcript: https://primaryimmune.org/sites/default/files/FOR%20WEB%20Undiagnosed%20Ilana%20Transcript.pdfTikTok personality and author of "Medical Gaslighting" Ilana Jacqueline has captivates her curious followers with tips on navigating a hostile medical system. Unfortunately, her lessons are often things she's learned the hard way. Medical gaslighting: https://www.amazon.com/Medical-Gaslighting-Deserve-System-Makes/dp/1637745397/ref=sr_1_1?crid=FROEQYELD5A2&dib=eyJ2IjoiMSJ9.M8ujTsCfx7OiEXXjoBlASPHIHCak2xLFGUqPz0W4cT8mG8uwVYRda1tkP7HakgUxdEFnScIS0cB26F31dbVvO0h7ZgT4JYSRGjXu748gyAbLvQDLWS9GCeaqcq9WdTDY7tvBVHkiZByaOIKRKwxnj4_EPRzINv_YcaZlbb1iag998ueBekHfgt-gWTEvFygODrVHfYIHN3Bs_k5MwmTUJazTX7PWa59EQABi8lESigA.OGwcZUHvLJsR2wvT-fVsYULlFTgqnjYnpXEPbw37A-A&dib_tag=se&keywords=medical+gaslighting&qid=1743001146&sprefix=medical+gaslighting%2Caps%2C114&sr=8-1Follow Ilana on TikTok: https://www.tiktok.com/@ilana_jacquelineThe information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.Support for the Immune Deficiency Foundation programs for undiagnosed and underserved populations is provided by CSL Behring, CVS Specialty Pharmacy, Grifols, Pharming, and Merck & Co.
Transcript: https://primaryimmune.org/sites/default/files/Cx20%201.1%20transcript.pdf.Immune Deficiency Foundation volunteers Riley and Nick discuss the complications and strategies that helped them transition from pediatric to adult care for their chronic illnesses.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.Get involved: https://primaryimmune.org/get-involved/volunteer.
Immune Deficiency Foundation president and CEO Jorey Berry provides updates to the community for February 2025
Transcript: https://primaryimmune.org/sites/default/files/Bold%20Conversations%203.1%20Transcript.pdfJalisa Clark is a Research Fellow at the Center on Health Insurance Reforms (CHIR) at Georgetown University’s McCourt School of Public Policy. Today, she joins Dr. Nicole for a deep dive into inequitable health insurance practices in the U.S.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Transcript: https://primaryimmune.org/sites/default/files/Mental%20health%20tips.pdfBecky Lenning is the owner and clinical director of Yellow Lotus Clinical Services for Healing and Wellness, where she brings over fourteen years of clinical experience as a licensed professional counselor to her practice.To learn more, volunteer, or donate, visit primaryimmune.org/donate.Presented with support from Takeda and CSL Behring.
CONTENT WARNING: This episode contains discussions of suicide planning. If you need help, call the National Suicide Hotline at 988.Transcript: https://primaryimmune.org/sites/default/files/Undiagnosed%20Matt%20Lesser%20Transcript.pdf.The story of Matt Lesser is one that's marked, of course, by persistence, but also by vulnerability, self reflection, and hard earned humility. Join us as we explore the impossible crux of mental health, splintered family, and primary immunodeficiency.Your support of the Immune Deficiency Foundation helps ensure people like Matt have what they need to thrive with PI. Please visit primaryimmune.org/donate.To learn more, volunteer, or donate, visit primaryimmune.org/donate.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.Support for the Immune Deficiency Foundation programs for undiagnosed and underserved populations is provided by CSL Behring.
TRANSCRIPT: https://primaryimmune.org/sites/default/files/Covid%2C%20Flu%2C%20RSV.pdfThis informative Q&A session offers crucial insights for patients, caregivers, and healthcare professionals. Don't miss this opportunity to enhance your understanding of immunization in the context of PI and learn practical steps for safeguarding health during challenging seasons. View Dr. Ward's slides: https://primaryimmune.org/sites/default/files/Ward%20COVID_flu_RSV%20091924.pdfView Dr. Keller's slides:https://primaryimmune.org/sites/default/files/IDF%20Vaccines%20PID%202024-%20Keller.pdfTo learn more, volunteer, or donate, visit primaryimmune.org/donate.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20GI%20Connection.pdfView a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20PI%20and%20GI%20connection.pdfPeter J. Mannon, M.D. discusses common gastrointestinal symptoms for people with primary immunodeficiency as well, and discusses the interesting link between the two.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.To learn more, volunteer, or donate, visit primaryimmune.org/donate.
Transcript: https://primaryimmune.org/sites/default/files/LUKE%20WALL%20antibody%20deficiency%20q%26a.pdfDr. Luke Wall discusses antibody deficiencies in this Q&A from October 24, 2024.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Transcript: https://primaryimmune.org/sites/default/files/Cx20%20ep%202%20transcript.pdfIn part two of our pilot episode, Heartbreakingly Beautiful, Victoria Medl and Cassie Mummert continue their discussion about hope, support, and learning who to trust with vulnerable truths about their health. Content warning: This podcast features sensitive subject matter such as mental health, bullying, religion, suicide, and confronting mortality. The views expressed in this podcast do not necessarily reflect the views of the Immune Deficiency Foundation, its employees, sponsors, or Board of Trustees. Listener discretion is advised.
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20ChronicxTwenties%201.1-1.pdfIn this 2-part pilot episode, two members of the Immune Deficiency Foundation’s youth advisory committee -- Cassie Mummert and Victoria Medl – discuss mental health coping strategies, spirituality, and the complications and joys of dating other people with rare diseases.Content warning: This podcast features sensitive subject matter such as mental health, bullying, religion, suicide, and confronting mortality. The views expressed in this podcast do not necessarily reflect the views of the Immune Deficiency Foundation, its employees, sponsors, or Board of Trustees. Listener discretion is advised.
Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20BC%2002.02%20Susanna%20Raj.pdfSusanna Raj joins Dr. Nicole to discuss the harrowing story of her childhood immigration from India to receive CGD treatment in the United States and Canada.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.Read Susanna's story: https://primaryimmune.org/resources/news-articles/determined-keep-moving-forward
Transcript: https://primaryimmune.org/sites/default/files/Bold%20Conversations%202.2%20Transcription.pdfImmune Deficiency Foundation staff members Alissa Creamer and Megan Messick join Dr. Nicole to discuss the inclusions efforts that went into planning the blockbuster 2024 PI conference.Dr. Nicole's conference session (The Elephant in the Exam Room): https://youtu.be/kn7gM7hsGA8
Season 2 premiere. Dr. Nicole Rochester discusses social determinants of health, as well as ideas for creating more equitable living conditions for optimal public health.Follow Dr. Rochester on LinkedIn: https://www.linkedin.com/in/nicole-rochester-mdTo learn more about primary immunodeficiency, to donate, or to volunteer, visit https://primaryimmune.org/donate.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Dr. Joud Hajjar provides an explanation of the causes and potential treatments for symptoms of fatigue with primary immunodeficiency.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.TRANSCRIPT: https://primaryimmune.org/sites/default/files/PI%20and%20fatigue%20podcast.pdfView a pdf of this presentation: https://primaryimmune.org/sites/default/files/2024-2-28-IDF-Fatigue.pdf
Darcy Gott shares stories of risks involved with having PI as a college student, from mismanaged university health systems to pressure to fit in, and beyond.
One of the most universal issues those with primary immunodeficiency face in the U.S. is simply navigating a complicated medical system. Getting a referral to an immunologist can feel absolutely insurmountable, even before the inevitable struggles with prior authorizations and annual reviews from insurance companies for life-changing, or even life-saving, medication.On this episode of Undiagnosed, Dr. Kelley Hagerich describes the unique shame and difficulty she experiences as a physician with primary immunodeficiency.Find Dr. Hagerich on LinkedIn: https://www.linkedin.com/in/kelley-hagerich-md-mph-facp-dabom-13896129/The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.How Healers Heal: https://www.amazon.com/How-Healers-Heal-Physicians-Transforming/dp/1961549018/ref=sr_1_1?hvadid=676936602450&hvdev=c&hvlocphy=9012709&hvnetw=g&hvqmt=e&hvrand=5896383303205199856&hvtargid=kwd-2187558197162&hydadcr=22192_13517500&keywords=how+healers+heal&qid=1703012579&sr=8-1
This conversation includes the topics of suicidal and self-harm ideation. We understand that not everyone is capable of hearing such conversations. Viewer discretion is advised.This episode of the IDF Podcast is presented with support from Takeda, Horizon Therapeutics, CSL Behring, and Grifols. On this episode of The IDF Podcast, we turned to six young people who are longtime volunteers, Cassie Mummert, Darcy Gott, Ethan McGrew, Jesse McCall, Lance McCall, and Victoria Medl to discuss how they navigate the stress of college, postgraduate studies, and mental wellness with primary immunodeficiency.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Dr. Don Kohn of UCLA provides an update on emerging gene therapy treatments for ADA-SCID.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Rob Gorski shaped the way we discuss parenting for neurodivergent children with his acclaimed blog, The Autism Dad. While all three of his sons are on the autism spectrum, his eldest son, Gavin, is diagnosed with CVID, as well. In this episode of Undiagnosed, Rob candidly discusses his family's journey, mental health, and the struggle of impossible decisions.Read Rob's blog at https://www.theautismdad.com/.Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20Father%20and%20Son.pdfThis episode is presented with support from Takeda, Horizon, CSL Behring, and Grifols.
Dionne Stalling, founder of Rare and Black, discusses her decades-long journey to PI diagnosis with Dr. Rochester.
Drs. Nicole Rochester and Vivian Hernandez-Trujillo discuss disparities in PI, language barriers, rebuilding trust, and the importance of meeting communities where they are.TRANSCRIPT: https://primaryimmune.org/files/transcription-ep-4-bcpdfFind Dr. Hernandez-Trujillo on LinkedIn: https://www.linkedin.com/in/vivian-hernandez-trujillo-608207a/Find Dr. Rochester on LinkedIn: www.linkedin.com/in/nicole-rochester-m-d-40700812The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Dr. Jay Bhatt, Deloitte's Managing Director Center for Health Solutions and Health Equity Institute, joins Dr. Rochester to discuss the business and economic case for investing in health equity.
"US health care can’t afford health inequities": https://www2.deloitte.com/za/en/insights/industry/health-care/economic-cost-of-health-disparities.html
Transcript: https://primaryimmune.org/files/transcript-bold-conversations-dr-jay-bhattpdf
Find Dr. Bhatt on LinkedIn: https://www.linkedin.com/in/dr-jay-bhatt/
Find Dr. Rochester on LinkedIn: www.linkedin.com/in/nicole-rochester-m-d-40700812
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Academy Award-nominated writer and producer Emily V. Gordon joins Tracy Shaw during the 2023 PI Conference to discuss vulnerability, storytelling, limits, and working in Hollywood with a primary immunodeficiency.
Transcript: https://primaryimmune.org/files/transcript-fireside-chat-with-emily-v-gordonpdf
The saga of popular Twitch personality Ironmouse's life reads much like the anime stories from which she finds inspiration: A talented young woman’s dreams are smashed by illness and circumstance, yet she, in her innate desire to provide for those she loves while making the world a friendlier, sillier, and more musical place, creates a path of her own to unimaginable success.
Transcript: https://primaryimmune.org/sites/default/files/Undiagnosed%20Ironmouse%20transcript.pdf
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Your support of IDF helps ensure people like Ironmouse get the support they deserve. Donate here: https://primaryimmune.org/idf-online-donation
twitch.tv/ironmouse
Popular YouTube and Twitch personality CDawgVA talks about his history growing up in Wales, moving to Japan to pursue voice acting, and how meeting his friend Ironmouse led him to raise money for IDF.
Transcript: https://primaryimmune.org/sites/default/files/Connor%20Podcast%20Transcript.pdf
Your support of IDF helps make programs like this possible. To donate, volunteer, or learn more, visit primaryimmune.org/donate.
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Dr. Lauren Sanchez delivers a talk on the complicated and emotional process of SCID and PI patients transitioning from pediatric to adult care.
Transcript: https://primaryimmune.org/sites/default/files/Transitioning%20from%20pediatric%20care.pdf
To view the video of this presentation on YouTube, click here: https://www.youtube.com/watch?v=aKl7tZJiiZc
Click here to view a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Sanchez%20Transition%20of%20Care%205-31-23%20FINAL.pdf
IDF Transition Guide: https://primaryimmune.org/publication/patients-and-families/immune-deficiency-foundation-guide-young-adults
Your support of IDF helps make programs like this possible. To donate, volunteer, or learn more, visit primaryimmune.org/donate.
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20--%20Undiagnosed%20Episode%202.pdfA cut on the roof of your mouth. A step in a shallow puddle during a game of backyard football. Potting soil beneath your fingernails. Occurrences like these are, at worst, minor inconveniences for most of the world. However, they can lead to weeks or months of agony for some. This reality is made even harsher for someone who finds profound joy in the simplicity of growing flowers from tilled earth. Someone like Shane – who has to take extreme caution when performing the most calming of hobbies. Before being diagnosed with chronic granulomatosis disease, or CGD, Shane suffered intense, frequent infections that left him hospitalized for weeks at a time, and with a reluctant dependence on opioids. This is his story.Undiagnosed is an Immune Deficiency Foundation production. Your support of IDF helps to ensure that people like Shane get the resources, education, and community support they need to live healthier, happier lives. To learn more about PI, to volunteer, or to donate, visit primaryimmune.org/donate.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Dr. Stacey Clardy (Associate Professor of Neurology at the University of Utah, Salt Lake City VHA) answers questions from the PI community about her clinical study: Neurological Manifestations of CVID.For a transcript of this podcast, click here: https://primaryimmune.org/sites/default/files/FINAL%20-%20Neuro%20pod%20Q%26A%20transcript.pdfDr. Clardy's paper on neurological symptoms in CVID: https://nn.neurology.org/content/10/3/e200088The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Dr. Sherita Golden (Vice President and Chief Diversity Officer, Professor at Johns Hopkins Medicine) joins Dr. Rochester to discuss the roots of medical mistrust among Communities of Color – from historical examples such as the Tuskegee Syphilis Study to contemporary and personal examples that marginalized individuals understand all too well. For a transcript of this episode, click here: https://primaryimmune.org/sites/default/files/Bold%20Conversations%20episode%202%20transcript.pdfStudy on confidence in the U.S. healthcare system: https://www.ihi.org/about/news/Documents/IHIPressRelease_ABIMFPilots_March2023.pdfFind Dr. Golden on LinkedIn: https://www.linkedin.com/in/sherita-golden-4388a9202Find Dr. Rochester on LinkedIn: https://www.linkedin.com/in/nicole-rochester-m-d-40700812The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Series premiere. On average, it takes nine to fifteen years of untreated illness to be diagnosed with and treated for a Primary Immunodeficiency. Recent studies estimate that 70 - 90% of those with PI do not yet have a diagnosis.You’re listening to Undiagnosed – an Immune Deficiency Foundation podcast. These are the true stories of the harrowing journey to diagnosis.Imagine an energetic young girl. As the oldest of four children under the age of five, she’s the caretaker of her siblings. She’s a bit of a teacher’s pet, and has an inquisitive mind. She does well in school despite being constantly on the move as the daughter of a Naval officer. She’s the type of child who goes ice skating in the winter and eats carrots straight from the garden. You’d likely never assume that a debilitating illness would alter every aspect of that young girl’s life – because that illness is invisible to everyone but her.For that energetic young girl, much of the story of her life would be colored by missed opportunities for proper care… by a complex web of unrelated but entangled health issues that pointed to a larger problem no one would understand for more than six decades.That young girl is Sandy. This journey is hers.Your support of IDF helps to ensure that people like Sandy get the advocacy, education, and community support they deserve. To donate, volunteer, or learn more about primary immunodeficiency, visit www.primaryimmune.org.The views and opinions expressed are not necessarily those of IDF, its donors, employees, or Board of Trustees.Follow IDF on social media:YouTube: https://www.youtube.com/channel/UC-e7Jua_piexR70CVoaofYwFacebook: https://www.facebook.com/ImmuneDeficiencyFoundation/Twitter: https://twitter.com/IDFCommunityInstagram: https://www.instagram.com/idfcommunity/?hl=en
Series premiere. Dr. Nicole Rochester, IDF's Medical Advisor for Health Equity, discusses the differences between equality and equity, where disparities in health equity can be found, and some of the consequences of a healthcare system that erodes the trust between patients and physicians.
Dr. M. Elizabeth M. Younger of Johns Hopkins University School of Medicine joins IDF's Lynn Albizo and Stephanie Steele to discuss issues surrounding the use of Skilled Nursing Facilities for patients with Primary Immunodeficiency. Ask IDF: http://primaryimmune.org/askidfThe information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Sarah C. Glover DO (Professor of Medicine, University of Mississippi) answers community questions about the relationships between gastrointestinal issues and primary immunodeficiency.To view the video of Dr. Glover's full presentation, click here: https://www.youtube.com/watch?v=62Ns3X-Ry6YScholarly article: Clinical Presentations, Diagnostic Considerations, and Therapeutic Options for Gastrointestinal Manifestations of Common Variable Immune Deficiency -- https://journals.lww.com/ajg/Abstract/2022/11000/An_Expert_Opinion_Approach__Clinical.14.aspx
Dr. John W. Seymour, PhD, LMFT (Professor Emeritus and Distinguished Faculty Scholar at Minnesota State University, Mankato)discusses the links between mental and physical health, and how individuals with PI can best care for minds.Click here to view a PDF of the presentation: https://primaryimmune.org/sites/default/files/2022%20PI%20Conference-Connection%20Physical%20Mental%20Health-Seymour.pdfAsk IDF: http://www.primaryimmune.org/askidfDonate or volunteer: https://primaryimmune.org/waystogive
Alissa Creamer (IDF's Director of Community Services) and Melissa Raspa (RTI's Senior Research Public Health Analyst) discuss the successes of the 4-year SCID Compass program.SCID Compass Website: https://scidcompass.org/RTI International: https://www.rti.org/PI and Travel: https://primaryimmune.org/travelling-with-piThe information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
IDF's own Colleen Brock (RN, Manager of Medical Programs) and Stephanie Steele (Director of Payor Relations and Policy) give a presentation on making sure you, as an individual with PI, have the tools you need to get the care you deserve.
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Returning to In-Person Events
IDF's Tammy Black and Alissa Creamer discuss the organization's return to in-person events, as well as the safety protocols and virtual offerings available at the upcoming Walk for PI and PI Conference events.
IDF Clinician Finder: https://primaryimmune.org/clinician-finder
Walk for PI: https://www.walkforpi.org/
Primary Immunodeficiency Conference: https://web.cvent.com/event/1593c0cc-9b7b-4ffc-9f24-d4964dda8206/summary
2022 is already more than half over, so we at IDF are reflecting on the goals we’ve set, and the progress we’ve made toward meeting them. On this episode, Jamie Sexton, director of state policy, and Becca Russ, grassroots advocacy specialist, discuss the organization’s advocacy work at a state level so far this year, and the progress we’ve made toward improving the lives of those in the PI community.
Faces of IDF: https://primaryimmune.org/faces-idf
I Am Immunocompromised Card: https://primaryimmune.org/immunocompromised-card
Action Alerts: https://primaryimmune.org/current-action-alerts
M. Elizabeth Younger, CRNP, PhD, Assistant Professor of Pediatrics at Johns Hopkins University School of Medicine joined us at a recent IDF forum to discuss immunoglobulin replacement therapy and the various ways it can be tweaked to fit each patient's unique needs.
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
To view the slideshow used in the presentation, click here: https://primaryimmune.org/sites/default/files/4-For%20Website-IDF%20Forum-Ig%20Therapy-FINAL-5.19.22.pdf
Thank you to Takeda, CSL Behring, Grifols, and Accredo for sponsoring this event.
Dr. Arturo Casadevall is a Bloomberg Distinguished Professor of Molecular Microbiology & Immunology and Infectious Diseases, as well as a recent inductee to the National Academy of Sciences. Today, he joins us to discuss his research into convalescent plasma in the fight against COVID-19.
Tammy Black sits down with IDF's new President and CEO, Jorey Berry, to discuss surprises and goals after her first few months with the organization.
When a child is diagnosed with Severe Combined Immunodeficiency or SCID, not only is the child affected but the family is as well. In this episode, we will be talking with certified child life specialist, Samantha Childs, MS, CCLS about the importance of supporting siblings of children with chronic illness, specifically SCID. This session was originally presented as a SCID Compass Lunch and Learn.
Being diagnosed with a rare disease like PI can be intimidating, as well as confusing. Hear from panelists, Nicole Rochester, MD, Mary Hintermeyer, APNP, and Brian Rath, JD as they review some important questions and information that you should use when discussing your diagnosis concerns with your healthcare provider. This session was originally presented as an IDF Forum.
For those living with rare diseases, such as PI, it is important to have a strong voice in state government and advise policymakers on critical issues related to access, coverage, and the diseases themselves. Many state policymakers are unaware of the challenges the rare disease community faces. To help bridge these gaps in knowledge, Rare Disease Advisory Councils or RDACs are created. RDACs serve as an advising body and liaison between the rare disease community and state governments. With us today to discuss their work with RDACs in their state is a panel of IDF advocates: Jessica Goddard and Rachel Goddard from South Carolina, and Marian Furst from Utah.
According to the Bureau of Labor Statistics, employment in science, technology, engineering, math fields (otherwise known as STEM), is projected to grow twice as fast in the next decade as for all occupations. Even so, a recent Pew Center study reported that only 7% of recent graduates in STEM fields were Black students. In today's episode, we will be talking with two experts, Dr. Nicole Rochester and Alexis Mobley, to help us gain a better understanding of how to address these concerns and why it matters.
Chronic Granulomatous Disease or CGD, one of the rare forms of primary immunodeficiency, causes an increased susceptibility to infections caused by certain bacteria and fungi. In today’s diagnosis-specific episode, we will be exploring treatment options, particularly Bone Marrow Transplant, or BMT for CGD with Felicia Morton and Dr. Vinod Prasad.
In this SCID Compass episode, we will be talking with two research specialists, Virdette L. Brumm, Ph.D., and Sharon A. Kidd, MPH, Ph.D., from the Primary Immune Deficiency Treatment Consortium or PIDTC to discuss a collaborative study on assessing neurodevelopmental outcomes in SCID patients. This session was originally presented as a SCID Compass Lunch and Learn.
In this episode, we will be addressing payer challenges as well as discussing the ability to ensure access to genetic testing with Manish Butte, MD, Ph.D., and Abraham Yunis, MBA. This session was originally presented during IDF’s Rare of the Rare Summit in October.
Are you interested in learning more about clinical research trials that are available for you? In today’s episode, we will be discussing important information about clinical trials with Jason Bradt, MD, Ali Smyth, Ph.D., and Elizabeth(Buffy)Garabedian, RN, MSLS. This session was originally presented during IDF’s Rare of the Rare Summit in October.
Undergoing treatment for Severe Combined Immunodeficiency or SCID involves months in the hospital as well as months of isolation. Today, we will be speaking with Rachel Homer about how her family navigated isolation, especially during the pandemic.
As the Coronavirus progresses, the COVID-19 vaccine continues to be our best form of protection against the deadly virus, especially for those living with primary immunodeficiency or PI. The CDC recommends all individuals who are 12 years old and older receive a COVID-19 vaccine. In today’s episode, we will be discussing the importance of the COVID-19 vaccine, specifically for teens, with a panel of Teen Leaders.
One of IDF’s many great initiatives, IDF Walk for Primary Immunodeficiency, unites all members of the PI community to help create better lives for those living with these rare, chronic disorders. You can register for an IDF Walk for PI in your area as a participant or as part of a team. Many teams are created for the walks and are led by enthusiastic Team Captains! With us to discuss being a team captain is Rachel Novak, the team captain of Team Cats Peeps.
For those living with primary immunodeficiency, awareness about these rare, chronic disorders is crucial. Listen as influential leaders within the PI community, Harper Spero, Carol Ann Demaret, Autry Beamon, and John Robison, discuss the misconceptions, public portrayals, and general understanding of PI.
As our nation grapples with issues of bias and racism, we have an obligation to address racial disparities in the PI community, in medicine, and in society at large. Listen as our panelists, Nicole Rochester, MD, FAAP, Michele Andrasik, PhD, and Vivian Hernandez-Trujillo, MD discuss the importance of achieving health equity by increasing opportunities for everyone to live their healthiest life possible, no matter who they are.
Plasma-derived therapies are used daily by thousands of individuals around the world with chronic, rare conditions. Because of its diverse and lifesaving uses, knowledge of plasma-derived therapies and plasma donation is critical. Here with us to discuss the ethics of plasma is a panel of influential leaders, Mark Skinner, JD, Johan Prevot, Val Bias, and Peter Jaworski, Ph.D. This episode was originally presented during IDF’s 2021 PI Conference in June.
While we usually dive into topics that are medical in nature, we wanted to take the opportunity today to talk with a subject matter expert of a different type - IDF Interim CEO, Kathryn Stephens. Kathryn Stephens joined the IDF team in mid-April as Interim CEO of IDF. She comes to us with more than 20 years of experience in nonprofit management. Listen as we discuss her work as well as examine her role as Interim CEO.
As part of the blood screening during a newborn screening at birth, doctors measure the T cell receptor excision circles or TRECs to test if they are within a normal or abnormal range. Abnormal TREC results could mean that a baby has Severe Combined Immunodeficiency or SCID, or it could be a different condition associated with the immune system. It is essential to learn about the medical steps parents should take if their child has an abnormal result and is diagnosed with low T cells. We will be discussing these medical steps further today with Dr. John Routes.
Wiskott-Aldrich Syndrome or WAS is a unique form of primary immunodeficiency. WAS primarily affects males because it’s an X-linked recessive condition and is characterized by abnormal bleeding and eczema of the skin.
To discuss WAS further, we will be talking with our guest, Sumathi Iyengar, the Executive Director of the Wiskott-Aldrich Foundation. Dr. Iyengar is a pediatrician-turned-advocate for WAS after her son was diagnosed at a young age. She is a partner and longtime friend of IDF.
Many people living with primary immunodeficiency rely on injectable medical therapies such as immunoglobulin replacement therapy, or Ig, to maintain healthy lives. Receiving these infusions can be frightening to those who are afraid of needles, and can challenge anyone who has to receive multiple needle pricks. Beyond needle pain, people with PI may also be living with chronic pain, causing issues such as arthritis, inflammation, or muscle aches. Pain management is crucial and necessary to help those suffering from acute or chronic pain. We discuss pain management further with Dr. Amy Baxter, the CEO and Founder of Pain Care Labs and the inventor of the physiological pain blocker product, Buzzy. Buzzy and other Pain Care Labs products can be found on www.paincarelabs.com or www.amazon.com.
Receiving advice or support after diagnosis of a genetic condition can be overwhelming for families. One resource for information about the condition and for counseling related to living with the uncertainties and the concern about your child is genetic counseling. Genetic counselors work alongside your medical team to advise individuals and families affected by genetic disorders like Severe Combined Immunodeficiency, or SCID. Listen as Barbara Biesecker, PhD shares her expertise in genetic counseling.
As we continue to battle COVID-19 into 2021, everything around us seems to be changing - attending school is now virtual, seeing our friends is done socially distant while wearing a mask, vacation plans are being canceled or rescheduled, and so much more. For teens living with PI, fear, anxiety, and loneliness may be overwhelming, as many try to stay isolated to keep themselves healthy. Today, we will be talking with a panel of young adults living with PI to discuss how they have coped during the age of COVID-19, including some tips and tricks to feel less isolated while staying at home.
Severe Combined Immunodeficiency, or SCID, is a life-threatening primary immunodeficiency, typically diagnosed at birth. Early detection is critical for these children, as is the prevention of infection and early treatment. With early treatment, most children with SCID should be able to develop their own working immune system. While most families tend to focus on the best course of treatment, such as hematopoietic stem cell transplantation or gene therapy, long-term care or follow-up is necessary to maintain a healthy life. Here with us to discuss the importance of long-term follow-up after treatment is Jolan Walter, MD, PhD.
Making in-person doctor’s appointments and checkups have always been the norm for all of us. However, with the spread of the coronavirus, many of us have tried to minimize entering new spaces. It can be daunting, especially for those living with primary immunodeficiency, who are more susceptible to bacteria and infections. Luckily, many healthcare providers have transitioned over to telehealth, or virtual healthcare, due to the ongoing pandemic. Today, we will be discussing the benefits and challenges of virtual healthcare with Saira Haque, Ph.D., the Senior Health Informaticist and Virtual Care Portfolio Leader with Research Triangle Institute, or RTI International, an independent, nonprofit institute that provides research, development, and technical services.
During the fall and winter months, as we begin to bundle up for the cold weather, we must also remember it’s time to protect ourselves during flu season. Influenza, commonly referred to as the flu, is typically characterized by the onset of fever or feeling feverish/chills, aching muscles, sore throat, and a cough. For people living with a primary immunodeficiency, the flu can cause severe complications, beyond those just mentioned, such as pneumonia or bronchitis. By taking preventative measures, such as vaccination, members of the PI community can have a decreased chance of being exposed. Listen as we discuss navigating flu season with PJ Maglione, MD.
People living with a primary immunodeficiency, or PI are missing key parts of their immune system that help fight infections. Some types of PI leave people unable to make antibodies of their own. Many individuals living with PI rely on immunoglobulin replacement therapy (or Ig) to provide the antibodies that we don’t make on our own. Those antibodies are necessary to fight off bacteria and viruses. These replacement antibodies come from human plasma. This plasma is collected from volunteers and is used to make Ig and other plasma-derived therapies that are necessary to the survival of many living with PI as well as other rare diseases. We will be discussing the importance of plasma with Amy Efantis, the President & CEO of the Plasma Protein Therapeutics Association or PPTA, an organization representing more than 850 human plasma collection centers in North America and Europe.
Figuring out your journey through life can be tough, especially as you grow older and more independent. One of the best parts of being a teenager is having a little freedom and making your own decisions. In this episode, Keegan Hartman is with us to discuss how to manage our health while learning how to be more responsible for our own life choices.
Common Variable Immune Deficiency, or CVID, is just one of the more than 400 primary immunodeficiencies, characterized by low levels of serum immunoglobulins and loss of antibodies, which causes an increased susceptibility to infection. While it is considered “common” compared to other immune deficiencies, questions still remain about the diagnosis, treatment, and well-being for people living with CVID. In this podcast episode, we will be discussing the symptoms, treatments, and health management associated with CVID with our guest, Dr. Charlotte Cunningham-Rundles.
Hemophagocytic lymphohistiocytosis (HLH) is a severe systemic inflammatory syndrome that can be fatal. HLH occurs when histiocytes and lymphocytes become overactive and attack the body rather than just bacteria and viruses. Join the Immune Deficiency Foundation as we sit down with Dr. Michael B. Jordan, from Cincinnati Children’s HLH Center of Excellence, to discuss the identification and management of HLH. To learn more about inheritance and PI, visit the IDF website: https://primaryimmune.org/about-primary-immunodeficiencies-diagnosis-information/inheritance. To learn more about HLH, how to diagnosis HLH, research and more, please visit: https://www.cincinnatichildrens.org/service/h/hlh.
The transition to college is both stressful and exciting. For those living with a chronic disease like a primary immunodeficiency (PI), adjusting to campus life can be even more challenging. College students with a chronic condition generally require strategies to balance academics, socializing, and managing their disease. In this episode, the Immune Deficiency Foundation explores resources for college students with PI and offers tips for making the most of your college years.
For people with primary immunodeficiency diseases (PI), employment is about more than just making money and job satisfaction. You need a job that will allow you to perform at a high standard with your diagnosis and will offer good health insurance benefits. There are many young people with PI who have amazing jobs. Join this Immune Deficiency Foundation (IDF) podcast and learn how you can be one of them.
People living with chronic illnesses know the physical toll it takes on the body. But it also takes an emotional toll and understanding how you are feeling mentally is as important as understanding how you are feeling physically. This podcast episode explores the emotional and psychological impact of a primary immunodeficiency disease (PI) in young adulthood, the connection between our minds and bodies, and how we can manage this relationship to positively affect our overall health.
Young adults with primary immunodeficiency diseases (PI) must develop independent disease self-management skills as they transition from pediatric to adult-oriented healthcare systems. Join this podcast episode from the Immune Deficiency Foundation (IDF), learn about how young adults can best manage their PI and find a balanced approach to healthcare and life.