Rare Disease Advocate Turned Filmmaker Turns Lens on his Son

33:57
 
공유
 

Manage episode 272348539 series 60790
Player FM과 저희 커뮤니티의 RARECast 콘텐츠는 모두 원 저작자에게 속하며 Player FM이 아닌 작가가 저작권을 갖습니다. 오디오는 해당 서버에서 직접 스트리밍 됩니다. 구독 버튼을 눌러 Player FM에서 업데이트 현황을 확인하세요. 혹은 다른 팟캐스트 앱에서 URL을 불러오세요.

Clinton Moore was a reluctant rare disease advocate. It took several years for him to become engaged in the rare disease community after his son Chandler was diagnosed with cystinosis, a rare, genetic, metabolic disease. Moore, who today is president of the Cystinosis Research Network, can add filmmaker to his credits. Moore tells his son’s story in a full-length documentary Walk in My Shoes. The film, which is available for free on YouTube, offers a view into the daily life of a boy and his family dealing with a rare disease. We spoke to Moore about his son’s rare disease journey, his own emergence as an advocate, and how he came to recognize the power of an individual to make a difference.

315 에피소드