UMass Chan Medical School will launch Rare Diseases, Real Stories, a six-episode podcast series on Monday, Feb. 10.
The series shines a spotlight on the courage, resilience and advocacy work of families affected by rare diseases. Each episode offers an intimate look into their lives, struggles with grief, determination to fight for answers and their profound love and hope. The stories illustrate how their collaboration with UMass Chan researchers is driving innovation and fostering new rare disease treatments.
This transcript was created using speech recognition software. While it has been reviewed by the Office of Communications, it may contain errors.
[MUSIC]
Host Jennifer Berryman
Rare Diseases, Real Stories is a special podcast series
It is about children living with rare diseases and their parents.
Blyth Taylor Lord, The Courageous Parents Network
In 1999, a diagnosis of infantile Tay Sachs was 100 percent a death sentence
Jo Kaur, Riaan Research Initiative, Riaan’s mother
It was a journey that ended with the result we never saw coming.
Jennifer Berryman
It’s about the transformational power families wield in moving rare diseases research forward.
Lee Greenwood, Noa’s father
It’s a community that relies on each other.
Jennifer Berryman
Each episode is about courage, perseverance.
Linda Pham, Raiden Science Foundation, Raiden’s mother
As parents, we are going to fight with him till the end.
Tommy Pham, Raiden Science Foundation, Raiden’s father
Gene therapy—it provides hope.
Jennifer Berryman
Hope AND Love.
Lori Greenwood, Noa’s mother
I’m going to tickle you.
[GIGGLING]
Lee Greenwood
There is something about Noa that sparkles. It’s infectious.
Jennifer Berryman
Each family battles bravely on the front lines when every moment counts.
Lori Greenwood
She is doing things that we never expected her to do.
Jennnifer Berryman
I’m Jennifer Berryman. I’ll be your host.
This is a production of UMass Chan Medical School.
Rare Diseases, Real Stories is intended to inform, inspire and connect the rare diseases community. The series illuminates the incredible network of scientists, clinicians, families and advocates working to drive rare diseases research forward.
The podcast is produced by the Office of Communications at UMass Chan. It will be available Feb. 10 on all major streaming platforms. Subscribe to Rare Diseases, Real Stories and join this journey of hope, resilience and determination.
For updates and episode highlights, follow @UMassChan on Instagram, X, YouTube, LinkedIn and Facebook.
