Voices Behind Huntington's

Audio biographies from people affected by HD, whether they have HD, are a caregiver, or at risk.
Each week, during May 2014, we will be adding another audio biography.

 

Cheryl Stavley

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  Perseverance is the word that Cheryl Stavley used to describe the Huntington’s Disease community in this interview — something which, as a caretaker, she is extremely familiar with. Through this telling of her story, Cheryl weaves through her first run‐ins with HD, what it is like going through the diagnosis of a significant other and children, insight into the life of a caretaker, and offers her outlook on the HD community and why she now works to further awareness of the disease.
 

Dr. Samuel Frank

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  Resilient is a term Dr. Samuel Frank uses to describe the Huntington’s Disease community — a trait he has obviously inherited through his close work with it. In no-way an outsider to the HD community — Dr. Frank expresses his research and personal interests in working with Huntington’s Disease in this jovial and laughter-ridden interview. From his first run-ins with HD through the affects of the HD community on his day-to-day life Dr. Frank takes us through his goals, his aspirations and frustrations as a researcher and clinician working with Huntington’s Disease.
 

Gina Delucia

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  Gina Delucia is an advocate for the Huntington’s disease family—as she says. In this interview, Gina discusses her goals as an advocate as well as the changing landscape within the HD community. By telling her story—Gina hopes to reach people far and wide to help push for advancements not only in research, but also in law and care for people living with Huntington’s everyday.
 

John Mirabito

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  In hopes of inspiring others to participate and become involved in the caring HD community, John shares a bit about his life living with HD. Despite John’s challenges, his positive outlook radiates throughout this interview as he shares stories about his diagnosis, and how HD has changed his life.
 

Ryan Lallier

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  In this interview [and dialogue] Ryan Lallier covers many aspects of living with and working with Huntington’s Disease: as a family member, Ryan discusses how HD has been interwoven into many aspects of his life. As someone who has been through genetic testing, Ryan opens up about the process and the emotions behind testing. As a volunteer and an advocate with a background in marketing, sales, and technology—Ryan enters a dialogue about his hopes for HDSA and for advocacy on behalf of Huntington’s Disease. Ryan’s honesty is refreshing and inspiring in it’s own right.