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1 of 20 PodcastAuthor: Jonathan Cappiello
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 youre interested in genetics, rare disorders, medicine, and healthy living-- this is the podcast for you! Language: en Genres: Health & Fitness, Medicine Contact email: Get it Feed URL: Get it iTunes ID: Get it |
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Achondroplasia: Munira Shamim
Episode 15
Monday, 17 November, 2025
Season 5, Episode 18: In conversation with Munira ShamimI 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.orghttps://rarediseases.info.nih.gov/diseases/8173/achondroplasia https://www.chop.edu/conditions-diseases/achondroplasia, #AchondroplasiaAwareness #RareDiseaseCommunity #DwarfismAdvocacy #GrowingStrongerTogether #GeneticResearch #RareDiseaseAwareness #PatientAdvocacy #StrongerTogether #HopeForRare #RareButNotAlone
