1 of 20 Podcast: Recent Episodes
Jonathan Sweeney
Jonathan Sweeney was diagnosed with a rare genetic disorder that only 20 people in the world have. The condition is called 3 hydroxyacyl coa synthase deficiency, which in short compromises his immune system and his body cannot process fats. Each week, he will discuss his lifestyle, his diet, and how he adapted to his condition. Additionally, he has a variety of guests to talk about their conditions. If you’re interested in genetics, rare disorders, medicine, and healthy living-- this is the podcast for you! Support this podcast: https://anchor.fm/1of20podcast/support
Season 5, Episode 17: In conversation with Beatriz Kaori Miyakoshi Lopes
I am excited to welcome Beatriz “Bia” Kaori Miyakoshi Lopes to the podcast! 🗣️🦓✨
About Bia:
Bia Kaori is the first patient advocate for FDMAS in Latin America. Her journey in social media began recently, but it has already been a wild and impactful ride. Living with not one but two rare diseases, and with a master’s research background focused on accessibility and infrastructure, Bia is dedicated to sharing knowledge and striving to make the world a little better.
As the first patient advocate for FDMAS in and from Latin America, Bia recognizes the significant lack of answers, cures, information, and patient voices in the region. While FDMAS remains globally under-researched, the scarcity of resources in Latin America is even greater. At 28 years old, Bia was deeply moved upon finally meeting others with the same condition—an experience that required traveling to the United States.
An interview with the FDMAS Alliance to share her story served as a turning point, inspiring Bia to expand her advocacy through social media. There, she documents life with FDMAS by sharing personal experiences, limitations, struggles, and successes.
Today, Bia continues to use her platform to showcase everyday realities, break stigma around accessibility and rare diseases, and ensure that voices like hers are heard in Latin America and beyond.
What is Fibrous Dysplasia/McCune-Albright Syndrome?:
Fibrous dysplasia (FD) is a rare disease in which normal bone is replaced with scar-like fibrous tissue. This condition can occur in any bone in the body and sometimes affects multiple bones. The most common sites are the bones of the skull and face—Bia has hers in her left palate, cheek, and eye bone.
Fibrous dysplasia can occur alone or as part of McCune-Albright Syndrome (MAS), in which the endocrine system and skin are also affected.
These are two very rare, chronic diseases without a cure.
Resources Bia shared?:
@fdysplasiaorg
https://fdmasalliance.org
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RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness
Season 5, Episode 16: In conversation with Carolyn Haeler
In this special episode, Carolyn and I have a meaningful and relatable conversation about how we adapted to our dietary restrictions in a world where it is challenging. Carolyn’s story is remarkable, because instead of waiting for the change, she initiated the change. She is the CEO of Founder of Mightylicious Gluten Free Cookies,
To know Carolyn is to know she is a lifelong foodie, Carolyn’s love language has always been baking. In 2012, at the age of 31, she was diagnosed with celiac disease—a diagnosis that would change her life for better and for worse. After 9 months of illness, she was finally able to heal her body from the inside out. Carolyn became passionate about functional ingredients, nutrition, and living a gluten-free life. This led her to founding Mightylicious Gluten Free Cookies, a woman-owned company that produces Gluten Free Cookies (7 varieties including vegan and vegetarian options) as well as Three new Gluten Free Flour Mixes.
They are available online at our website, Amazon and many retail outlets throughout the USA including Walmart and Krogers. We were just awarded the Good Housekeeping 2025 Best Snack Award for our Mightylicious Gluten Free Oatmeal coconut cookies.
Where to find Carolyn?:
https://www.instagram.com/mightyliciousfoods/
https://www.facebook.com/mightyliciousfoods
https://www.tiktok.com/tag/mightylicious
Season 5, Episode 15: In conversation with Brendan James Clark
→ About Brendan: Brendan is a patient who had a Desmoid Tumor. He was diagnosed with a desmoid tumor in his abdomen at the age of 19, following a car accident, extended hospital stays and major abdominal surgery to confirm the diagnosis. This experience has given him a unique perspective, both as a patient and future doctor.
He is currently a third-year medical student with a strong passion, especially for surgery and oncology. His journey has been shaped by his personal experience as a desmoid patient, which has shown him the value of improving patient care, raising awareness for rare diseases, and advocating for better overall understanding. He wants to use his experience as a patient to become the kind of doctor he wishes he had throughout his journey.
→ What is a Desmoid tumor? They are rare growths that derive from connective tissue.
→ Resources Brendan shared?:
https://dtrf.org/
https://rarediseases.org/rare-diseases/desmoid-tumor/
https://www.cancer.gov/pediatric-adult-rare-tumor/rare-tumors/rare-soft-tissue-tumors/desmoid-tumor
Season 5, Episode 14: In conversation with Camryn Berry
→ About Camryn: Camryn Berry is a young adult living with Fibrous Dysplasia/McCune-Albright Syndrome. Through her experiences getting diagnosed with her condition as a child, growing up in rural Maine, she has had numerous experiences in her rare disease odyssey. Most importantly, being the first female child to receive a medication recommended by the NIH, ending her need for further surgeries.Now as an adult, Camryn is a remarkable individual who is paving a bright path forward as a “patient scientist”, a Ph.D. candidate at Boston Children’s Hospital and Harvard Medical School. She has a unique intersection of her experiences as a patient living with FD/MAS and a Ph.D. researcher studying the disease. This journey has highlighted the importance of incorporating patient perspectives in shaping research questions, study designs, and outcome measures that reflect patient priorities. She is committed to demonstrating how meaningful collaboration between researchers and patients can lead to more impactful and relevant discoveries.
→ What is Fibrous Dysplasia/McCune-Albright Syndrome?: Fibrous dysplasia (FD) is a rare disease where normal bone is replaced with scar-like fibrous tissue. This condition can occur in any bone in the body and can sometimes affect more than one bone. The most common sites for fibrous dysplasia are the bones in the skull and face - mine is in my left palate, cheek, and eye bone. Fibrous dysplasia can occur alone or as part of McCune-Albright Syndrome (MAS). In MAS, the endocrine system and skin are also affected.
→ Resources Camryn shared?:
@fdysplasiaorg
@everylifeorg
@foundationforfacesofchildren
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RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity
FibrousDysplasia
McCuneAlbrightSyndrome
FDMASAwareness
Season 5, Episode 13: In Conversation with Clio Lang
→ About Clio: Clio Lang, speaker, model and author of “No One’s Daughter” is a brain surgery survivor dedicated to finding a cure for hydrocephalus. She is a Rare disease legislative advocate through the Every Life Foundation.
It is important to note that Hydrocephalus can happen to anyone. Over 1 million patients in America have hydrocephalus and shunts have a 50% failure rate. Meaning that brain surgery is the only treatment for this condition.
She shares her experience of living with this condition—managing daily life as a rare disease patient, navigating the medical system, and finding joy even in difficult moments. Clio taught me the power of storytelling, the importance of using your voice to drive change, and what it means to stand firmly on the right side of a cause.
→ What is Congenital Hydrocephalus (Hydro)?: It is a condition where the brain cannot drain CSF itself and requires a brain shunt. She has a programmable shunt called a Codman Certas Plus, which is connected to a catheter running from her brain to her abdomen. She has a rare form of hydrocephalus resulting from a brain bleed at birth.
→ Resources Clio shared?:
@hydroassoc
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RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #HydrocephalusAwareness #BrainHealth #LivingWithHydrocephalus #HydroWarrior #MedicalAdvocacy
Season 5, Episode 12: In conversation with Siobhain Carolan
→ About Siobhain: Siobhain Carolan is a rare disease patient with Congenital Myasthenic syndrome and was misdiagnosed for 10 years. Despite her challenges, she has found her voice in advocacy, especially with the Everylife Foundation. I met Siobhain in 2023 through Rare Disease Week on Capitol Hill. She is a fellow Connecticut rare warrior and a dear friend.
She is using her voice to fight for a better tomorrow on all levels from her hometown in Connecticut to Washington D.C. Her next and most exciting venture will be on May 31 in Boston, where “Team Shivvy” will be walking to raise awareness and funds with @myastheniaorg .
All funds raised support the Myasthenia Gravis Foundation of America (MGFA), the largest, leading patient advocacy organization solely dedicated to finding a cure for the rare neuromuscular disease myasthenia gravis.
→ What is Congenital Myasthenic Syndrome?: CMS is a group of inherited neuromuscular disorders that cause muscle weakness due to problems at the neuromuscular junction, where nerves and muscles connect.
RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #MyastheniaGravis #MGWarrior #ChronicIllness #AutoimmuneDisease #MGStrong #NeuromuscularDisease #InvisibleIllness #RareDisease #MGAwareness #FightMG
Season 5, Episode 12: In conversation with Shea Linton
→ About Shea: She is a patient advocate living with Idiopathic Thrombocytopenic Purpura (ITP) and Hypermobile Ehlers-Danlos Syndrome (hEDS). She has served as a South Carolina Representative through the Young Adult Rare Representatives (YARR) organization since February 2022. As a graduate of Winthrop University, she plans to attend medical school to pursue her goal of becoming a pediatrician. She hopes to use her personal experience living with multiple rare diseases to spread awareness about the issues facing the rare disease community. Raised in rural South Carolina, she seeks any opportunity to educate on the disadvantages surrounding a lack of access to care.
→ What is Idiopathic Thrombocytopenic Purpura (ITP)?: Idiopathic Thrombocytopenic Purpura (ITP) is a rare autoimmune condition characterized by a low platelet count, leading to easy bruising and bleeding.
→ What is Hypermobile Ehlers-Danlos Syndrome (hEDS)?: Hypermobile Ehlers-Danlos Syndrome (hEDS) is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain. hEDS is also associated with a variety of other symptoms and related conditions that affect many different areas of the body.
→ Where to find Shea?:
@shea_linton
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RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #IdiopathicThrombocytopenicPurpura #ITPawareness #PlateletDisorder #HypermobileEDS #hEDSawareness #EhlersDanlosSyndrome #connectivetissuedisorder
- Season 5, Episode 11: In conversation with Natalia Cordero
→ Who?: Natalia Cordero is a rare disease mom, advocate, and podcast host. She started in Dylan's world, a space for medical families to get information about grants in Georgia, resources, events, recommendations, and more all in one place. Additionally, she Co-Hosts the Medical Momma Drama podcast, where she and her co-host Jen, talk about the challenges and victories of being Mommas of special needs children. Join them as they share personal stories, learning moments, and the experience they've gained through the drama of being a medical momma.
→ Rare Disease Connection: Natalia is the mom and caregiver to Dylan, who has MECP2 duplication syndrome.
→ What is MECP2 duplication syndrome?: MECP2 duplication syndrome is a condition that occurs almost exclusively in males and is characterized by moderate to severe intellectual disability. Most people with this condition also have weak muscle tone in infancy, feeding difficulties, poor or absent speech, or muscle stiffness (rigidity). Individuals with MECP2 duplication syndrome have delayed development of motor skills such as sitting and walking.
→ Where to find Natalia?:
@imnataliacordero_
@medicalmommadrama
https://www.indylansworld.org/
RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #MECP2 #Neurogenetics #GeneticResearch #RareDiseaseAwareness
Season 5, Episode 10: In conversation with Aaron Blocker
→ Who?: Aaron Blocker is a rare disease patient, content creator and Executive Director of the Mississippi Rare Disease Advisory Council.
He was born showing signs and symptoms of Hypophosphatasia (HPP), but didn’t receive a formal diagnosis until the age of 25.
Since then, he has undergone 27 surgeries related to HPP, including four total hip replacements beginning at age 20. In addition to HPP, he also lives with Crohn’s disease.
He is passionate about advocating for the rare disease community and currently serves as the Executive Director of the Mississippi Rare Disease Advisory Council. Some of the most valuable resources in his rare disease journey have been NORD and the Soft Bones Foundation, which focuses specifically on HPP.
Outside of advocacy, he’s a self-proclaimed science nerd. He holds a Master’s degree in Biomedical Research and works as a Population Health Data and Analytics Consultant for a hospital system. His combination of lived experience and scientific expertise fuels his mission to raise awareness, foster connection, and push for improved care and policy for those affected by rare diseases.
→ Rare Disease Connection: Aaron is a rare disease patient and advocate.
→ What is Hypophosphatasia (HPP)?: Hypophosphatasia is an ultra-rare metabolic bone disease caused by a genetic mutation in the tissue nonspecific alkaline phosphatase (TNSALP) gene. Which doesn’t allow my body to make enough alkaline phosphatase, an enzyme important for bone health.
→ Where to find Aaron?:
@aaronblocker_
→ Resources Aaron shared?:
https://rarediseases.org/mondo-disease/hypophosphatasia/
https://softbones.org
https://medlineplus.gov/genetics/condition/hypophosphatasia
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RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #Hypophosphatasia #HPPawareness #RareDisease #LivingWithHPP #BoneHealthMatters #ChronsDisease #IBDAwareness #ChronicIllness #FightUC #GutHealth
Season 5, Episode 9: In conversation with Shezad Nawab MBE
Meet Shezad – a trailblazing Deaf entrepreneur, business strategist, and international speaker with over two decades of experience in business strategy, venture capital, executive coaching, and management consultancy. Shezad is on a mission to break down communication barriers and champion inclusive business practices that empower Deaf professionals around the globe.
His Legacy of Excellence Includes:
- 9 Business Awards – Celebrated for groundbreaking achievements in entrepreneurship
- MBE 2017 – Honored for outstanding service in business and diversity
- Author of Born Deaf To An MBE – A powerful memoir chronicling his inspiring life journey
- Fluent in 6 Sign Languages – Including BSL, ASL, SASL, MSL, IS, and Arabic Sign
Tune in to hear Shezad’s unique insights, untold stories, and powerful conversations that push the boundaries of what’s possible.
Season 5, Episode 8: In Conversation with Lauren Schoeller
→ Who?: Lauren Schoeller grew up in a small New Hampshire town, attending the University of New Hampshire for undergrad. She completed her Master’s in Biomedical Sciences through Tufts University School of Medicine and is applying to medical school as an aspiring orthopedic surgeon. Now, she is a Clinical Assistant in Boston, MA, with prior experience in clinical research.
She was born with a rare genetic condition called Conradi-Hunermann Syndrome, which primarily impacts the musculoskeletal system, but also affects her hearing, vision, and skin. Lauren has undergone nearly 30 surgeries, ranging from limb lengthenings, a spinal fusion, hip reconstructions, and others in order to regain functionality and reduce pain. Patient advocacy is one of her greatest passions that stemmed from her experiences as a patient and has informed her perspective as a future healthcare professional. She is an Executive Board Member for Miles4Hips, a patient-driven hip dysplasia organization, the Director of Beautifully Made Community, a limb difference advocacy organization, and has most recently joined the Young Adult Rare Representatives through the EveryLife Foundation for Rare Diseases to take an active role in advocating for policy impacting the rare disease community. In her free time, Lauren enjoys exploring Boston, spending time with friends and family, and staying active— she is training for her first triathlon!
→ Rare Disease Connection: Lauren is a rare disease and advocate patient living with Conradi-Hunermann Syndrome.
→ What is Conradi-Hunermann Syndrome?: It primarily impacts the musculoskeletal system, but also affects her hearing, vision, and skin. Lauren has undergone nearly 30 surgeries, ranging from limb lengthenings, a spinal fusion, hip reconstructions, and others in order to regain functionality and reduce pain.
→ Where to find Lauren?:
@lauren.schoeller
@patientperspectivespod
→ Resources Lauren shared:
@beautifullymade_community
@miles4hips
Season 5, Episode 7: In Conversation with Erin Danzer
→ Who?: Erin Danzer is a 26 year old and is in the process of transferring to Cal-state to pursue her bachelor’s in Communications. She loves to write and craft in her spare time. She is a fierce advocate for FOP, rare disease and the chronic illness community, utilizing her social media to raise awareness.
→ Rare Disease Connection: Erin is a rare disease and advocate patient living with Fibrodysplasia ossificans progressiva (FOP).
→ What is Fibrodysplasia ossificans progressiva (FOP)?: It is an extremely rare genetic connective tissue disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present (heterotopic ossification), such as the ligaments, tendons and skeletal muscles. Specifically, this disorder causes the body’s skeletal muscles and soft connective tissues to undergo a metamorphosis, essentially a transformation into bone, progressively locking joints in place and making movement difficult or impossible.
→ Where to find Erin?:
@erinlovesyourface
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RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #FOP #FibrodysplasiaOssificansProgressiva #RareDisease #FOPAwareness #FOPResearch #FOPCommunity #FOPWarriors #FightFOP #CureFOP #fopsupport
Season 5, Episode 6: In Conversation with Sydney Alper
→ Who?: Sydney Alper, a best buddies ambassador and an advocate for people with disabilities.
→ Rare Disease Connection: Sydney has as a rare chromosome disorder called Chromosome 18q-proximal deletion.
→ What is Chromosome 18q proximal deletion: It is a genetic disorder that occurs when a portion of the long arm (q) of chromosome 18 is missing. This deletion typically involves the region near the centromere, the point where the two arms of a chromosome are joined.
→ Where to find Sydney?:
@disabilitiesunite21
Season 5, Episode 5: In Conversation with Laura Romano
Rare Disease Week Special Episode!!!
→ Who?: Laura Romano, Program Manager for @hearusyarr and a rare disease patient.
→ Rare Disease Connection: Laura oversees the young adult rare and is a indvidual with Classical-like Ehlers-Danlos Syndrome (clEDS).
→ What is YARR?: Young Adult Rare Representatives (YARRs) are highly motivated rare disease community members between 16 and 30 years old. The main purpose of YARR is to instill confidence in the next generation of rare disease advocates.
→ What is Classical-like Ehlers-Danlos Syndrome (clEDS): a heritable connective tissue disorder that causes severe skin hyperextensibility, velvety skin texture, generalized joint hypermobility, and easy bruising. clEDS is an ultra-rare disorder that affects less than 1 in 1 million people.
→ Where to find Laura and YARR?:
https://everylifefoundation.org/young-adult-representatives/
https://everylifefoundation.org/
sharingmystripes (Laura) on Instagram
hearusyarr (YARR) on Instagram
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RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #PodcastForACause #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #ClassicalEDS #clEDS #EhlersDanlosSyndrome #CollagenDisorder #HypermobileJoints #SkinHyperextensibility #GeneticCondition #RareDisorder #ConnectiveTissueDisorder #EDSTypeI
Season 5, Episode 4: In conversation with Bailey Miller.
→ Who?: Bailey Miller, a rare disease patient, a young adult rare representative
→ Rare Disease Connection: Bailey is a patient living with Occult Tethered Cord Syndrome & Syringomyelia.
→ What is Tethered cord syndrome: is a stretch-induced functional disorder associated with the fixation (tethering) effect of inelastic tissue on the caudal spinal cord, limiting its movement. This abnormal attachment is associated with progressive stretching and increased tension of the spinal cord as a child ages, potentially resulting in a variety of neurological and other symptoms.
Syringomyelia: the development of a fluid-filled cyst within the spinal cord. The cyst, which is sometimes called a syrinx, can grow larger over time.
→ Where to find Bailey?:
@
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RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #PodcastForACause #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #TetheredCordSyndrome #TCSAwareness #SpinalCordDisorders #TetheredCord #Syringomyelia #SyringomyeliaAwareness #ChronicPain #SpinalCordDisorders #InvisibleIllness
Season 5, Episode 3: In conversation with Ken Sullivan
→ Who?: Ken Sullivan, a rare disease, patient and advocate.
→ Rare Disease Connection: Ken patient living with Hypermobile Ehlers-Danlos Syndrome; Periodic Limb Movement Disorder.
→ What is Hypermobile Ehlers-Danlos Syndrome: Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain. hEDS is also associated with a variety of other symptoms and related conditions that affect many different areas of the body.
Periodic Limb Movement Disorder: Periodic limb movement disorder is rarely a primary disorder. It is mainly associated with restless leg syndrome, which may be primarily idiopathic or secondarily due to pregnancy or systemic disorders, particularly iron deficiency and chronic renal insufficiency.
Season 5, Episode 2: In conversation with Wes Michael
→ Who?: Wes Michael, the President and Founder of Rare Patient Voice
→ Rare Disease Connection: Wes Michael founded Rare Patient Voice in 2013 to give patients and caregivers with rare diseases the opportunity to voice their opinions in research studies.
→ What is Rare Patient Voice: Rare Patient Voice empowers patients and family caregivers to share their voices with researchers and companies developing products, devices, and treatments to improve lives. Their vision is to include the patient voice in research and ultimately improve the lives of patients everywhere. Rare Patient Voice is built on the core values of being a supportive resource for their
patients, a reliable partner to our clients, a responsible employer for their staff, and a
good citizens in their community. They are always listening to three key voices -- their
patients, clients, and employees.
→ Where to find Wes and Rare Patient Voice?:
https://www.linkedin.com/in/wesmichael
https://www.instagram.com/rarepatientvoice
https://www.facebook.com/rarepatientvoice
Season 5, Episode 1: In Conversation with Carter Hemion
→ Who?: Carter Hemion, a trailblazing advocate in the rare disease, disability and immunocompromised spaces.
→ Rare Disease Connection: Carter is an individual living with Ehlers-Danlos syndrome, Mast Cell Activation and Gastroparesis.
→ What is Ehlers-Danlos Syndrome: Defined by the National Organization of Rare Diseases (NORD) Ehlers-Danlos syndrome (EDS) is a group of related disorders caused by different genetic defects in collagen. Collagen is one of the major structural components of the body. Collagen is a tough, fibrous, protein, and serves as a building block essential in both strengthening connective tissue (e.g. bones) and providing flexibility where needed (e.g. cartilage).
→ Where to find Carter?:
@carter_cricket
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RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #PodcastForACause #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #EhlersDanlosSyndrome #EDS #ChronicPain #HypermobileEDS #InvisibleIllness #MastCellActivation #MCAS #ChronicIllness #AllergySymptoms #InvisibleDisability
Season 4, Episode 11: In conversation with Madison Bowe.
Who?: Madison Bowe, an incredible patient advocate.
Rare Disease Connection: Madison is an individual living Stiff Person Syndrome. She is leveraging her experience with a rare disease and the challenges of her diagnostic journey to advocate for a better future for others facing similar health struggles.
What is Stiff Person Syndrome: Defined by the National Organization of Rare Diseases (NORD )Stiff person syndrome (SPS) is a rare acquired neurological disorder that most often causes progressive muscle stiffness (rigidity) and repeated episodes of painful muscle spasms. Muscular rigidity often fluctuates (i.e., grows worse and then improves) and usually occurs along with the muscle spasms. Spasms may occur randomly or can be triggered by a variety of different events or circumstances including a sudden noise, light physical contact or when exposed to cold. The severity and progression of SPS varies from one person to another.
Where to find Madison?:
@catholicinspiration09 on Instagram or madisonbow95@yahoo.com
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RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #PodcastForACause #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity ##StiffPersonSyndrome #SPSAwareness #RareDisease #AutoimmuneDisorders #FightForSPS
Season 4, Episode 10: In Conversation with Patrick James Lynch, CEO of Believe Limited
→ Who?: Patrick James Lynch is the founder and CEO of Believe Limited, a media production company dedicated to telling the stories of inspiring individuals overcoming health challenges, particularly those in the bleeding disorders community.
→ Rare Disease Connection: Patrick is an individual living with Hemophilia A. Based on his own personal experiences with his condition, and his passion for film and media – he teamed up with Ryan Gielen to create their first project was Stop The Bleeding!, a comedic web series for young people with hemophilia.
→ What is Hemophilia A?: Defined by the National Organization of Rare Diseases (NORD) Hemophilia A, also known as classical hemophilia, is a genetic bleeding disorder caused by insufficient levels of a blood protein called factor VIII. Factor VIII is a clotting factor. Clotting factors are specialized proteins that are essential for proper clotting, the process by which blood clumps together to plug the site of a wound to stop bleeding. Individuals with hemophilia A do not bleed faster or more profusely than healthy individuals, but because their blood clots poorly, they have difficulty stopping the flow of blood from a wound.
→ Where to find Patrick?:
https://www.believeltd.com/
https://www.instagram.com/believeltd/
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RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #PodcastForACause #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #ListenUp #HemophiliaA #BleedingDisorder #HemophiliaAwareness #FactorVIII #LivingWithHemophilia
Justin Najimian is a prime example of young adults who will change the world. Justin's connection to rare diseases began when he was diagnosed with Hemophilia A. This rare hereditary bleeding disorder occurs when the body lacks enough of a clotting factor protein called factor VIII."
Through his experience with this condition, he has paved the way forward, enriching his life through involvement with various organizations, including Dance Marathon at his alma mater, Rutgers University, and The Hole in the Wall Gang Camp in Connecticut. His passion has evolved into a professional pursuit, as he recently completed his Masters in Public Health focusing on LGBT Health this spring and will begin studying to become a Genetic Counselor in the fall.
Justin’s positive spirit and his passion to pave the way is a good reminder that the future of healthcare is in terrific hands.
RESOURCES MENTIONED
- Serious Fun Camps
- Hole in the Wall Gang Camp
- Dance Marathon
- Trevor Project
HemophiliaA #RareDisease #FactorVIII #BleedingDisorder #HemophiliaAwareness
RareDisease #RareDisorders #RareConditions #RareDiseaseAwareness #RareDiseaseDay
RareDiseasePodcast #RareConditionsPodcast #RareDiseaseAwarenessPodcast #RareDiseaseDiscussion #RareDiseaseStories
LGBTHealth #QueerHealth #LGBTQHealthcare #LGBThealth
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Vamsi Koduri has many hats. He is an author, advocate, and a father on a mission to create a better tomorrow.
His son Maurya was diagnosed with SPG4 Hereditary Spastic Paraplegia. Typically a hereditary disease, however in Maurya’s case, the mutations were “de novo”, meaning the gene randomly mutates during embryo development and is not inherited from a parent.
This diagnosis was devastating to Vamsi and his wife but they chose to follow their faith in positivity and pave the way for their son to create a better tomorrow. They established a foundation in Maurya’s name. The Maurya Koduri Foundation’s mission is to increase awareness and to fund research to develop a treatment for Maurya and others with de novo Hereditary Spastic Paraplegia SPG4.
Maurya is full of life despite his circumstances. He excels at the piano, eagerly constructs LEGO sets, adores math and science, enthusiastically immerses himself in video games, harbors a deep fascination for animals and plants, religiously tracks NBA/NFL games, enjoys watching and playing various sports, actively engages in wheelchair basketball, and swimming.
Despite the darkness they face, Vamsi and his family are a beacon of light. This episode is a reminder to choose faith and hope because there is always a chance. And for Vamsi, Maurya deserves a chance.
To find out more about Maurya's story go to: https://www.mauryakoduri.org/
--- Support this podcast: https://podcasters.spotify.com/pod/show/1of20podcast/support
Meet Kyle Underwood -- a fierce advocate and loyal friend who navigates life with MPS II, also known as Hunter Syndrome, a rare genetic disorder. It is characterized by the abnormal accumulation of complex sugars in cells, impacting multiple bodily systems primarily affecting boys.
Kyle's resilience and strength shine through, teaching us invaluable lessons beyond any label.
In this incredible roundtable, join me, Kyle, and his best friend, Adam Haas, as they share their candid insights into the world of rare diseases, Kyle's journey, and the transformative power of allyship.
Together, Kyle and Adam are on a mission to raise awareness and support within the rare disease community. Their unwavering friendship is a powerful testament to the bonds of unconditional support and authenticity. Through their shared experiences, Kyle and Adam inspire us all with their genuine friendship and commitment to uplifting each other's true selves.
May 15 is MPS II Day, a dedicated occasion to raise awareness and support for individuals living with Hunter syndrome, highlighting their journeys and advocating for improved care and research.
Resources for MPS II / Hunter Syndrome:
Everylife Foundation for Rare Diseases
NORD - National Organization for Rare Diseases
Project Alive
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Katherine “Katie” Greenstein (Tiktok: @chronically.katie & Instagram: @katherine.greenstein ) is a friend of the podcast and a guest on this episode. Katie is much more than that; they are a fearless advocate for themselves and others in the rare, chronically ill, and disabled communities. Katie’s diagnostic odyssey has been arduous and inspiring. They received a diagnosis of Eosinophilic Esophagitis before turning 6, and later in adulthood, were diagnosed with Ehlers-Danlos Syndrome. Our conversation is fruitful and impactful as we discuss our mutual struggles to find the correct diagnosis and the long-standing issue of food options in mainstream restaurants and grocery stores. This conversation is eye-opening, thought-provoking, and motivating. It is a call to action to understand the human struggle in everyday life, the harrowing truth behind the medical system in our nation, and our mutual experiences with our conditions. I have attached the brilliant resources Katie mentioned in our episode. We can all learn a lesson from them. Disability Visibility by Alice Wong Content Creators: @philhatesgluten @crutches_and_spice@chronicallyillandhot--- Support this podcast: https://podcasters.spotify.com/pod/show/1of20podcast/support
Dr. George Ackerman shares his story about starting "Together for Sharon," which he and his family initiated to keep his mother, Sharon Riff Ackerman's memory alive and to spread the message of Parkinson's Awareness and hope for a cure.
George shares his journey as a caregiver for his mother and how he used her battle as motivation to create a better future for those affected by Parkinson's Disease. We discuss the ups and downs of Parkinson's, and how as a community, we can be more mindful of preserving dignity and humanity while caring for our loved ones.
George has made it his life mission to pave the way for more legislation, research, and community involvement. It serves as a valuable lesson for us all to be grateful for our health and how we can make a difference despite the circumstances.
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Meg Barker, a teen advocate joins me on the podcast today.
We discuss Meg's journey into advocacy within the rare disease community. From a young age, Meg felt compelled to amplify voices in the rare disease space due to their mother's battle with Hypophosphatasia; a condition that affects the mineralization of bones and teeth.
Despite their youth, Meg has found their place at the advocacy table, tirelessly advocating for awareness and support in this often overlooked area of healthcare.
In our discussion, we delve into the significance of raising our voices, regardless of volume, and how small conversations can ignite meaningful change. Tune in to discover how you can utilize your voice to effect change in every room you enter.
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Kevin Alexander joins the podcast, a fellow advocate and podcaster in the rare disease space.
PKU (Phenylketonuria) is a rare genetic disorder that inhibits the body's ability to metabolize the amino acid phenylalanine, requiring strict dietary management to prevent cognitive impairment and other serious health complications.
Our paths crossed at Rare Disease Week in Washington D.C. back in 2023, and since then, we've discovered a multitude of shared interests. Both immersed in the world of media and storytelling, Kevin and I are passionate about amplifying the voices within our community. Despite our common ground, our dietary restrictions set us apart—Kevin manages PKU, limiting his protein intake, while I navigate a condition restricting fat consumption.
Yet, our differences only enrich our conversation as we delve into various topics within the rare disease community. From the significance of advocacy to the power of storytelling, we explore the highs and lows of our respective conditions. Join us as we bridge our unique perspectives, united in our shared mission.
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Angela Denton Papazoglou sits down with me today.
She is so many things; a loyal friend, a kind human being, and a mom. Her most important role is as Mom to Yiannis, who has a rare disease IRF2PBL.
The symptoms are related to the broad spectrum of mutations in the IRF2BPL gene. The protein made by this gene is found in many different organs, including the brain. It is unclear how the protein made by this gene works in the body and why changes in the gene result in these disorders. The IRF2BPL may be involved in the regulation of other genes since IRF2BPL contains a special polyglutamine (polyQ) and polyalanine (polyA) tracts and such peptides are present in various forms of neurodegenerative diseases such as Huntington’s Disease (HD). IRF2BPL mutations resulting in a short non-working protein (nonsense mutations) seem to lead to different symptoms than other types of mutations
Yiannis is much more than his condition. He is funny, and happy, and radiates every room he is in.
Angela has made it her mission to save her son from this disease. We discuss being a rare mama, her foundation Yellow for Yiannis, and everything in between.
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Effie Parks joins me for our Season 4 premiere! This episode is baked with equal parts passion, advocacy, love, and open dialogue about the world of Rare Diseases. Effie is the mom to Ford, who has an ultra-rare disease, CTNNB1. Through her journey, she has transformed her pain into drive by creating and fostering a strong and welcoming community through her podcast "Once Upon a Gene."
Together, we reflect on her journey from the day of her beloved son's diagnosis many moons ago to the present day. There is so much to learn from this episode; you can discover how to ask for help to connect with this cherished rare community and everything in between.
You can listen to “Once Upon a Gene” wherever you listen to your podcasts.
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Dive into this heartfelt episode as we explore the inspiring narrative of Sierra Phillips and Albert Wang, two remarkable individuals who united to initiate "Librarey"—a haven where families dealing with rare diseases discover and exchange invaluable resources. Uncover the genesis of their shared dedication to materializing resources for rare disease patients and their families.
The genesis of it all was Sierra's resource guide, crafted from her experiences as a caregiver to her son, Jack—a resilient spirit grappling with Warsaw Breakage Syndrome. Sierra opens up about her multifaceted role as a caregiver, mother, and advocate for her son. Meanwhile, Albert sheds light on his background and inspiration for contributing to the Rare Disease community.
Join us on this journey to unravel the extraordinary evolution of Librarey, guided by the visionaries who set it in motion. This episode is heartwarming and inspiring.
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This episode features Megan Loden, a mother to two rare disease patients. Megan's story starts in 2020 with a life-altering phone call that changed everything for her Identical twin girls. We delve into their journey from diagnosis to treatment and how her determination led her to become an advocate, chairing the Arizona Angioma Community Alliance.
Megan has a unique spirit filled with resilience, determination, and bravery. She shares her story, and we discover the power of support, advocacy, and the quest for a better tomorrow in this compelling episode.
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Join us for a captivating episode as we spotlight Abbey Hauser, an inspiring young adult who bravely navigates life's challenges while living with a rare disease. In this episode, Abbey's story unfolds, driven by their determination to break barriers and embrace vulnerability.
Sparked by the transformative words of Brene Brown's "Daring Greatly," Abbey embarks on a remarkable journey. After years of resilience with Classical Ehlers-Danlos Syndrome, they find the courage to share their experience with the world. With an unwavering spirit, Abbey's mission goes beyond personal clarity – they seek to uplift and inspire the chronic illness community.
As a dedicated advocate, Abbey's involvement with the EveryLife Foundation for Rare Diseases speaks volumes. Their proactive role in the Young Adult Rare Representatives Program showcases their commitment to making a difference. Through engaging with lawmakers and empowering others on their own journeys, Abbey's advocacy illuminates the path toward strength and understanding.
Tune in for a robust conversation that sheds light on Abbey Hauser's extraordinary journey, their commitment to advocacy, and their unwavering dedication to a cause that impacts lives.
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In this thought-provoking episode of our podcast, we have the privilege of speaking with Makenzie Cabrera, a remarkable mother who shares her journey of raising a child with Familial Cold Autoinflammatory Syndrome (FCAS), a rare and debilitating genetic disorder. Through heartfelt storytelling and candid discussions, Makenzie provides an intimate glimpse into the daily challenges and triumphs of living with this condition. Join us as we delve into the impact of FCAS on her son's life and the resilience they both exhibit in the face of adversity.
Tune in to this episode as we shed light on the rare and often misunderstood world of Familial Cold Autoinflammatory Syndrome and discover the incredible strength and resilience of Makenzie and her son.
Resources for FCAS:
https://linktr.ee/makenziecabrera
https://rarediseases.org/rare-diseases/familial-cold-autoinflammatory-syndrome/
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Jonathan sits down with Becky, a remarkable individual living with Koolen de Vries, a rare genetic disorder. In this heartfelt episode, she shares her personal journey and opens up about her children's experiences with the disease. Tune in to gain insights into the challenges, triumphs, and incredible resilience of those impacted by Koolen de Vries. Don't miss this inspiring conversation on our rare disease podcast.
To learn more Koolen de Vries, Becky and her story:
https://instagram.com/koolen.mama?igshid=ZDdkNTZiNTM=https://instagram.com/thrivingrare?igshid=ZDdkNTZiNTM=https://www.facebook.com/groups/1094459464720257/?ref=share_group_linkhttps://www.facebook.com/groups/752446806195416/?ref=share_group_link
https://kdvsfoundation.org/
RareDiseaseJourney #GeneticDisorderAwareness #RareDiseaseLife #InvisibleStruggles #RareDiseaseSupport #GeneticDisorderWarrior #RareDiseaseAdvocate #GeneticDisorderCommunity #RareDiseaseInspiration #livingrare #RareDiseaseStrong #RareDiseaseAwarenessCampaign #GeneticDisorderFight #RareDiseaseWarriorStories #koolendevries
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This week, Jonathan speaks with Lauren, the Mom of Finn, who was born with Mic Cap; Microcephaly-capillary malformation (MIC-CAP) syndrome is an autosomal recessive disorder caused by biallelic STAMBP pathogenic variants. They discuss their journey to Finn’s diagnosis, his life with the condition, and finding purpose after loss. Finn is no longer with us, but his memory is alive.
To learn more about Mic-Cap: https://www.ncbi.nlm.nih.gov/books/NBK174452/
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In this episode, Jonathan sits down with Fran, a millennial caregiver “carennial” to her late father. After his passing, she has made it her purpose to educate and advocate for young caregivers caring for those with Alzheimer’s and Dementia.
For resources on Alzheimer’s Disease, visit: https://www.alz.org/
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In this episode, Jonathan sits down with Patricia, a mom and a caregiver of a child with Pyruvate Dehydrogenase Complex Deficiency. Wyatt is a 3-year-old with lots of energy, passion, and setbacks that he faces with a positive attitude. She discusses her journey as Wyatt's mom and caregiver and as an individual living with her own Rare Disease.
For resources on Pyruvate Dehydrogenase Complex Deficiency, visit:
https://rarediseases.org/rare-diseases/pyruvate-dehydrogenase-complex-deficiency/
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On the Season 3 premiere, Jonathan talks with Steve, a podcast host of Life with Jamie and More, a father, a caregiver, and so much more.
In this episode, they discuss the roles of being a caretaker and a father to his son Jamie born with Down Syndrome. Through his reflections on highs and lows, he gives an insightful perspective on life.
To learn more about Steve and his work: https://linktr.ee/lifewithjamieandmore
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On the season finale of Season 2, Jonathan sits down with Tiffany Goodchild, Karter’s Mom. Karter has spastic quadriplegia cerebral palsy, microcephaly (secondary to the HIE injury), a g-tube, is regarded as non-mobile/non-verbal, and seizures. Karter is the sweetest, silliest personality and most infectious smile! Tiffany and Jonathan discuss Karter’s day-to-day, his needs, and the lessons she has learned along the way. She shares her wisdom and positivity about being on this journey. And we talk about her foundation, the Kourageous Karter Foundation. Their Mission is to make life better for medically complex kids and the people who love them. And their Motto is Kourage: Strength in the face of grief or pain.
To learn about Tiffany and her work/resources, visit: https://kourageouskarter.org/
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On today’s episode, Jonathan sits down with Kareem and Sarita Edwards. They are parents to Elijah who has Trisomy 18, otherwise known as Edwards Syndrome. They discuss their non-profit organization “The E. WE Foundation”, named after Elijah. Their foundation's mission is to provide resources and support for families affected by Edwards Syndrome, commonly known as Trisomy 18, and other rare diseases, while changing the medical perspective through advocacy, education, and public policy efforts. And they discuss their journey with Elijah from their everyday life, their ups and downs, and everything in between with being Elijah’s parents.
To learn more about Trisomy 18: https://my.clevelandclinic.org/health/diseases/22172-edwards-syndrome
To learn about Sarita, Kareem, and their work, visit: https://theewefoundation.org/about/
rarediseaseawareness #trisomy18 #ultrararedisease #raredisease #rare #geneticdisorder #genetics #chronicillness #podcast #podcasts #podcasting #podcaster #podcastlife #podcastersofinstagram #podcasters #podcastshow #applepodcast #spotifypodcast
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On today’s episode, Jonathan sits down with Devin and Mike Dwyer.
They are parents to Jack who has SPG50. They discuss their journey with Jack and his rare disease. SPG50 is degenerative, both physically and mentally, and that spasticity progresses from a child's legs to their hands before mental decline starts. Jack would slowly lose the functionality of his body and then his mind.
Devin and Mike have made it their mission to bring awareness to SPG 50 by starting a nonprofit organization called "Jack's Corner" to raise funds so that all children with SPG50 can receive this gene therapy. Our goal is that no child or family ever gets this news again without feeling hope and knowing there is a cure.
To learn more SPG50 : https://rarediseases.org/rare-diseases/spastic-paraplegia-50/#:~:text=Spastic%20paraplegia%2050%20(SPG50)%20is,seizures%2C%20and%20progressive%20motor%20symptoms.
To learn about Devin, Mike, and their work, visit: https://www.jackscorner.org/
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In today’s episode, Jonathan sits down with Nikki McIntosh, the founder of "Rare Mamas". She discusses her journey with her son Miles and his rare disease, Spinal Muscular Atrophy (SMA). Nikki has immersed herself in the world of SMA, rare diseases, and disabilities and has become a fierce advocate for these communities. Nikki uses her faith, experiences, and writing to empower fellow rare-disease mothers.
To learn more Spinal Muscular Atrophy (SMA): https://www.curesma.org/
To learn about Nikki and her work, visit: https://raremamas.com/
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Jonathan sits down with Dr. Tommy Martin: a doctor of Internal Medicine and Pediatrics, a husband, and a father to Oliver, who has Lamb Shaffer Syndrome. This episode has been a year in the making! Jonathan talks to Tommy about fatherhood, being a caregiver to his son, Lamb Shaffer Syndrome, being a physician, and everything in between.
Dr. Tommy is one of Jonathan's role models, and he is so excited to have this opportunity!
Dr. Tommy's Social Media:
Instagram: dr.tommymartin
TikTok: dr.tommymartin
YouTube: https://www.youtube.com/c/TommyMartinMD/
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In today’s episode, Jonathan sits down with Ella Balasa, a patient advocate and a person living with Cystic Fibrosis. She shares her experience with her disease and the opportunities she has had as a patient advocate. She is insightful, resourceful, and a champion in the face of adversity.
To learn more about Cystic Fibrosis, visit: https://www.cff.org/
To learn about Ella and her work, visit: www.ellabalasa.com
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After an extended break, the 1 of 20 Podcast is back to school! Jonathan sits down with “The Northern Nerd” Mr. Dalton Hessel, a second-grade teacher from Wisconsin, and discusses all things back to school. This time of year can be exciting but for students who have challenges and are differently abled, it can be a nightmare. Tune in to see how Dalton fosters a safe inclusive environment for his students.
Dalton's Social Media:
- Instagram: _thenorthernnerd_
- TikTok: thenorthernerd
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Jonathan sits down with Madison Bopp, who has from Psoriasis. They have an open conversation about the disease and live with it daily.
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Jonathan sits down with Aubrey, a Girl Scout who has made her Gold Award all about Rare Diseases.
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On the Season 2 premiere of the 1 of 20 Podcast- Jonathan sits down with Whitney Frost, who has two children with INAD.
Infantile neuroaxonal dystrophy (INAD) is a rare inherited neurological disorder. It affects axons, the part of a nerve cell that carries messages from the brain to other parts of the body, and causes progressive loss of vision, muscular control, and mental skills.
Whitney has over 1.3 million followers on TikTok, where she shares her life with her family and two young children that have INAD.
Tune in to Spotify, Google Podcasts, or wherever you get your podcasts to listen to Jonathan and Whitney discuss the ups and downs of chronic illness, having a platform, and living and caring with those who have rare diseases.
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In this abbreviated episode of the 1 of 20 podcast, Jonathan takes the time to reflect on life as a college graduate. Tune in, and stay tuned for Season 2 in September!
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In this episode, Jonathan and special guest Sydney Reynolds, talk about mental health during the global pandemic. They reminisce on the ups and downs, their daily struggles, and their lifestyle during these tough times.
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In this episode, Jonathan and special guest Georgina Lloyd talk about the differences between Diabetes and Hypoglycemia. They reminisce on the ups and downs, their daily struggles, and their lifestyle. Please tune in on YouTube, Spotify, Google Podcasts and wherever you get your podcasts! #chronicillness #rare #raredisease #rarediseaseawareness #healthyliving #cleaneating #fastfood #recovery #podcasts #podcastersofyoutube #content #contentcreation #podernfamily #life #newepisode #entertainment #business #follow #movies #rap #funny #live #inspiration #sports #instagram #film #podcastlove #horror #media #podcastinglife #instagood #podcastaddict #podcastsofinstagram #podcasthost #coronavirus #quarantine #news #explorepage #googlepodcasts #mentalhealth #artist #diabetes #diabetic
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On this episode, Jonathan sits down in the studio and talks all about his safe foods. He explores nutrition labels and has a candid conversation about his relationship with food and healthy eating.
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In this episode, Jonathan has a special guest Sabrina Harmon on to discuss their Ulcerative Colitis. They have a discussion on the setbacks and their journey living with Ulcerative Colitis!
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In this episode, we meet our host, Jonathan Sweeney. He talks about his journey to where he is today, and the season to come! Today is Rare Disease Day, this episode is dedicated to all those warriors fighting their battles.
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Podcast host, Jonathan Sweeney is 1 of 20 people in the world with a rare genetic disorder. His condition is called 3 hydroxyacyl coa synthase deficiency... in short, his body does not process fats. This results in a strict diet, a healthy lifestyle, and a weakened immune system. His goal of this podcast is to talk about rare diseases, chronic illnesses, living and eating healthy, and talking about living with his condition! Join him every Sunday to hear about all these topics, special guests and so much more!
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