Episode 53: Jocelyn Wong - Morquio Syndrome

01/01/25 • 22 min

Jocelyn shares about living with Morquio Syndrome, a rare skeletal disorder. Her journey started in Hong Kong, where she spent part of her childhood, before moving to the US. Jocelyn reflects on the different approach to medicine between both countries, which partly led her to become a writer and patient advocate. She shares her struggles and triumphs, shedding light on a condition many may not understand. Her candid discussion highlights her resilience, the value of medical advancements, and her hope to inspire others.

The song that Jocelyn chose is Silence is Golden by Leslie Cheung.

The song that Jocelyn chose is Silence is Golden by Leslie Cheung.

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Episode 52: Chris Velona - Batten Disease CLN8

Chris shares the profound journey of raising his son, Sebastian, who has Batten disease CLN8. He reflects on the bittersweet experiences of witnessing Sebastian’s once-vibrant abilities erode under the weight of this rare, degenerative condition. Chris shares his constant search for new therapies that can help reduce the frequency of his son's seizures. We also talk about his fund-raising for clinical research and the lack of appetite from pharmaceutical companies to treat his son's rare condition.

The song that Chris chose is Tiny Dancer by Elton John.

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Episode 54: Joanne Paquette - Ollier's Disease

Ollier's disease has shaped Joanne's life since infancy. Her story is one of resilience, adaptation, and hope, as she recounts the challenges of undergoing numerous surgeries, navigating family dynamics, and finding ways to thrive despite her condition. Our conversation dives into Joanne's work as the founder of RAREsies, her mission to support those with rare diseases, and her advocacy for education and awareness. Through her words, Joanne radiates a spirit of determination and a belief in the power of human connection. As she shares her struggles and triumphs, she offers profound insights into living with a rare disease and how one can turn adversity into strength.

The song that Joanne chose is Love Shack by the B-52's.