Courageous Parents Network
rare diseases, real stories
In the final episode of Rare Diseases, Real Stories, two Massachusetts mothers who lost their children to rare diseases share how they turned their grief into purpose. Blyth Taylor Lord started the 13 years after her daughter, Cameron, died from Tay-Sachs disease. Jennifer Siedman lost her son, Ben, to Sanfilippo syndrome just shy of his 18th birthday. Together, Lord and Seidman launched the network to empower and support parents whose children are diagnosed with rare diseases and other serious illnesses. 🎧 Listen and subscribe to all episodes of Rare Diseases, Real...
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Jack's story: Hereditary spastic paraplegia type 4
rare diseases, real stories
Seven-year-old Jack Laidlaw, the oldest of three boys, is upbeat and friendly to everyone he meets, according to his parents, Anna and Richard Laidlaw. But Jack faces challenges due to a rare disorder he cannot yet comprehend. His parents are determined to remain hopeful and create a better future for him despite his diagnosis of hereditary spastic paraplegia type 4 (SPG4). 🎧 Listen and subscribe to all episodes of Rare Diseases, Real Storie: 💜 Learn more about the Laidlaw family and their efforts to support SPG4 research. ...
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Raiden's story: UBA5
rare diseases, real stories
Tommy and Linda Pham turned their heartbreak over their son Raiden’s ultra-rare disease diagnosis, UBA5 disorder, into hope for others. There are only 30 known cases in the world, but the Phams’ relentless determination and their partnership with UMass Chan Medical School could pave the way for gene therapy advancements. 🎧 Listen and subscribe to all episodes of Rare Diseases, Real Stories: 💜 To learn more about the Raiden Science Foundation, visit the foundation’s website at:  Follow Raiden’s journey on Instagram: 💜 UBA5...
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Riaan's story: Cockayne syndrome
rare diseases, real stories
Meet Jo Kaur and Richie DiGeorge, parents of Riaan, a vibrant 5-year-old boy who has , a rare and debilitating genetic disease. In this podcast episode, Riaan’s parents take listeners on an emotional journey through their lives. They reflect on their darkest days, their resilience, their small victories and their enduring hope. 🎧 Listen and subscribe to all episodes of Rare Diseases, Real Stories on our website at or wherever you get your podcasts. 💜 To learn more about the Riaan Research Initiative, visit the foundation’s website at: . Follow Riaan's journey on and...
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Noa's story: Canavan disease
rare diseases, real stories
Four-year-old Noa Greenwood is an inspiration for families facing , a rare genetic disorder. In June 2022, she became the third child to receive a promising gene therapy for the disease, developed by researchers at UMass Chan Medical School. This episode explores Noa’s story, her parents' commitment to rare disease awareness and the hope innovative treatments provides. 🎧 Listen and subscribe to all episodes of Rare Diseases, Real Stories: 💜 Learn more about Canavan disease: 🔗 Share Noa’s story using the...
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Catherine's story: Tay-Sachs disease
rare diseases, real stories
Two-year-old Catherine Radivilova’s story is as unlikely as it is amazing. While pregnant with Catherine, Tamara Radivilova and her son fled their home in Ukraine in the days following Russia’s invasion, while her husband stayed behind to fight in the war. For the first nine months of her life Catherine developed as expected, but after symptoms arose and setbacks occurred, Catherine was diagnosed with Tay-Sachs disease, a fatal genetic disorder. Through an unlikely series of events, Catherine and her mother found themselves in the U.S., where Catherine became the final participant...
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Coming soon: Rare Diseases, Real Stories
rare diseases, real stories
UMass Chan Medical School will launch Rare Diseases, Real Stories, an inspiring six-episode podcast series on Monday, February 10. Rare Diseases, Real Stories is a special podcast series that celebrates families who are transforming the world of rare diseases. In each episode, hear from parents about the challenges they face before and after their child is diagnosed, and the grief, strength, love and unwavering hope that guide them. Through their stories, you'll discover how their collaboration with UMass Chan researchers is driving innovation and fostering new rare disease...
info_outlineIn the final episode of Rare Diseases, Real Stories, two Massachusetts mothers who lost their children to rare diseases share how they turned their grief into purpose. Blyth Taylor Lord started the Courageous Parents Network 13 years after her daughter, Cameron, died from Tay-Sachs disease. Jennifer Siedman lost her son, Ben, to Sanfilippo syndrome just shy of his 18th birthday. Together, Lord and Seidman launched the network to empower and support parents whose children are diagnosed with rare diseases and other serious illnesses.
🎧 Listen and subscribe to all episodes of Rare Diseases, Real Stories: umassmed.edu/rarediseasesrealstories
💜 Learn more about the Courageous Parents Network:
🔗 Share the Courageous Parents Network episode using the following hashtags: #RareDiseasesRealStories, #RareDiseases, #podcast
Interested in learning more about gene therapy research? Email us at: [email protected]