1 of 20 Podcast

Jonathan Cappiello
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Jonathan Cappiello 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!

  1. 17/11/2025

    Achondroplasia: Munira Shamim

    Season 5, Episode 18: In conversation with Munira Shamim I am excited to welcome Munira Shamim to the podcast! 🗣️🦓✨ → About Munira: Munira Shamim is the co-founder of Growing Stronger, a nonprofit organization dedicated to advancing research and improving care for individuals with achondroplasia, the most common form of dwarfism. A passionate advocate and mother of three, Munira’s journey into rare disease advocacy began when her son, Ahmin, was diagnosed as a baby with achondroplasia. Since that diagnosis, Munira has become a vocal champion for involving families in the research process, building community-centered resources, and advocating for science that reflects the lived realities of people with rare conditions. From managing her son’s surgeries to enrolling him in one of the first clinical trials for children with achondroplasia, she brings a grounded and deeply personal perspective to every conversation. In 2020, Munira and her husband launched Growing Stronger to create the kind of resource they wished had existed when Ahmin was first diagnosed. Through research, advocacy, and education, the organization aims to empower families and improve outcomes for those with achondroplasia. Growing Stronger has supported initiatives ranging from clinical trial awareness to day-to-day living tips for families navigating the complex care needs associated with the condition. What is Achondroplasia?: Achondroplasia is a rare genetic bone condition caused by a mutation in the FGFR3 gene. It affects the way bones grow and develop—particularly in the limbs and spine—and can lead to significant health implications, including spinal compression, sleep apnea, short stature, and hearing issues, all of which can have a lasting impact. → Resources Munira shared?: https://growingstronger.org https://rarediseases.info.nih.gov/diseases/8173/achondroplasia  https://www.chop.edu/conditions-diseases/achondroplasia,  #AchondroplasiaAwareness #RareDiseaseCommunity #DwarfismAdvocacy #GrowingStrongerTogether #GeneticResearch #RareDiseaseAwareness #PatientAdvocacy #StrongerTogether #HopeForRare #RareButNotAlone

    34 min

  2. 07/10/2025

    Fibrous Dysplasia/McCune-Albright Syndrome: Beatriz Kaori Miyakoshi Lopes

    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?:@fdysplasiaorghttps://fdmasalliance.org✨✨✨#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness

    54 min

  3. 29/09/2025

    Mightylicious Gluten Free Cookies, Founder and CEO, Carolyn Haeler

    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

    51 min

  4. 30/06/2025

    Desmoid Tumor: Brendan James Clark

    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

    41 min

  5. 27/05/2025

    Fibrous Dysplasia/McCune-Albright Syndrome - Camryn Berry

    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 ✨✨✨ #RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #FibrousDysplasia #McCuneAlbrightSyndrome #FDMASAwareness

    44 min

  6. 19/05/2025

    Congenital Hydrocephalus - Clio Lang

    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✨✨✨#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #HydrocephalusAwareness #BrainHealth #LivingWithHydrocephalus #HydroWarrior #MedicalAdvocacy

    38 min

  7. 12/05/2025

    Congenital Myasthenic Syndrome - Siobhain Carolan

    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

    25 min

  8. 05/05/2025

    Healthcare in Rural Communities and ITP/hEDS - Shea Linton

    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✨✨✨#RareDiseaseAwareness #FightForACure #RareButReal #InvisibleIllness #RareDiseaseCommunity #RareDiseasePodcasts #ListenToRareVoices #RareStories #RareDiseaseAwareness #PodcastLife #PodcastsToListenTo #PodcastRecommendations #PodcastCommunity #IdiopathicThrombocytopenicPurpura #ITPawareness #PlateletDisorder #HypermobileEDS #hEDSawareness #EhlersDanlosSyndrome #connectivetissuedisorder

    47 min
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About

Jonathan Cappiello 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!

Information

  • Creator
    Jonathan Cappiello
  • Years Active
    2021 - 2025
  • Episodes
    54
  • Rating
    Clean
  • Copyright
    © Jonathan Cappiello
  • Show Website
    1 of 20 Podcast