Rare Diseases, Real Stories

Courageous Parents Network


Listen Later

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 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

đź’ś Learn more about the Courageous Parents Network:

Courageous Parents Network

NeuroJourney

đź”— 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]

...more
View all episodesView all episodes
Download on the App Store

Rare Diseases, Real StoriesBy UMass Chan Medical School

  • 5
  • 5
  • 5
  • 5
  • 5

5

5 ratings


More shows like Rare Diseases, Real Stories

View all
48 Hours by CBS News

48 Hours

10,957 Listeners

Symptomatic: A Medical Mystery Podcast by iHeartPodcasts

Symptomatic: A Medical Mystery Podcast

591 Listeners