Audio biographies from people affected by HD, whether they have HD, are a caregiver, or at risk.
Each week, during May 2015, we will be adding another audio biography.

 

2015


Marguerite Hamel-Nardozzi
listen or read transcript
Marguerite’s interview brings a striking balance to living with and caring for loved ones with Huntington’s Disease. Marg discusses the pendulum between being a spouse and, at the same time, a caretaker to her husband who is currently in the middle stages of HD while simultaneously balancing getting the most out of their days together and dealing with the emotional turmoil that HD leaves in its wake. Marg bravely discusses so many of the challenges a family faces when moving into the middle-stages of HD that are too rarely talked about.


Chris Scarcella
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Chris Scarcella spends his time advocating for research as he navigates the hurdles of living with Huntington’s Disease. In this interview, Chris walks us through his day-to-day life with HD, while reflecting on a childhood spent with a gene-positive parent. Despite all of the challenges Chris continues to overcome, he radiates with a positivity that infects those around him and carries through his efforts to educate others and advocate on behalf of HD.


Kathleen McCarthy
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With an amazingly up-beat attitude, Kathleen McCarthy discusses the challenges she faces an advocate for the HD community. As someone formerly at-risk, and now gene-negative, Kathleen’s story weaves through an adolescence and young-adulthood spent in an anxious purgatory of not-knowing her status, through to the other side as an advocate and caretaker in the HD community. Aside from struggles in advocacy, Kathleen describes the unique place in the community she now holds as someone who is gene-negative.
 

2014


Cheryl Stavley
listen or read transcript
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
listen or read transcript
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.
 
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