Twenty Notable Individuals Diagnosed with Huntington's Disease
Famous Faces and Huntington's Disease: A Look at Those Affected and Advocating
Huntington's disease (HD), a hereditary neurodegenerative disorder, has touched the lives of many, including several well-known figures. Their public experiences have contributed significantly to raising awareness about the condition.
Woody Guthrie (1912–1967)
One of the most notable figures diagnosed with Huntington’s disease is Woody Guthrie, the influential American folk singer-songwriter. Guthrie's erratic behavior in his later years was later understood to have been caused by HD, which was little known at the time. He was confined to a hospital from 1954 until his death in 1967. Guthrie’s struggle with HD helped bring attention to this hereditary neurological disease and inspired later generations of musicians, including Bob Dylan and Joan Baez, who visited him during his illness.
Francis Collins
Francis Collins, an American geneticist and physician-scientist renowned for his leadership of the Human Genome Project and gene discoveries related to several genetic diseases, also made significant contributions to the understanding of HD. Although he himself does not have Huntington’s disease, Collins led a team in 1993 that discovered the gene causing Huntington chorea (another name for Huntington’s disease). His research efforts have been crucial in advancing scientific understanding of HD and other genetic disorders, thereby indirectly raising awareness.
Celebrities and HD Awareness
Other celebrities such as Katharine Hepburn and Mariah Carey have significant public biographies, but there is no indication they were affected by Huntington's disease or played a role in public awareness of it.
Advocates and Affected Individuals
Several individuals, both celebrities and non-celebrities, have bravely shared their experiences with HD. Katie Jackson, an American musician, was diagnosed with HD in her 20s and died in 2017 at the age of 33. Sally Pryor, an Australian journalist, was diagnosed with HD in her 30s and has continued to work as a journalist and has spoken publicly about her experiences with the disease. Carl Zimmerman, a successful businessman and philanthropist, was diagnosed with HD in 2006 and has since become advocates for HD research and funding with his wife.
Other notable figures include Tom Isaacs, a British advocate for Parkinson's disease, who was also diagnosed with HD; Sharon Lee Giganti, an American actress and model, who wrote a book about her experiences with HD; Elise Faustman, a prominent attorney and advocate for HD research; Tim Moynihan, an American musician and writer; and Marianna Palka, a 37-year-old actress, screenwriter, producer, and director, who is aware of her 50% risk of inheriting HD due to family history.
Raising Awareness and Support
Many affected individuals and their families have taken to social media and blogs to share their stories and raise awareness about HD. Examples include Adam Hayden, who documented his journey on a blog, "HD in the Heartland," to raise awareness about the disease; Katie Moser, an American soccer player, who established the Katie Moser Foundation; and Lauren Holder, a young woman who has become an advocate for HD awareness and research and has shared her journey on social media.
In a short documentary film called "The Lion's Mouth Opens", Marianna Palka's courageous moments during the genetic test process are recreated. Chris Furbee, an American artist, was diagnosed with HD in his 30s and continued to create art despite the disease’s impact on his motor skills. Corey Carrier, an American actor, was diagnosed with HD in his 20s and has continued to work as an actor and has spoken publicly about his experiences with the disease.
These individuals, along with Woody Guthrie and Francis Collins, have made significant contributions to raising awareness about Huntington’s disease and providing support for those affected by the condition.
- Woody Guthrie, a renowned American folk singer-songwriter, suffered from Huntington's disease, a hereditary neurological disorder, and his struggle with the condition brought attention to the disease.
- Francis Collins, the American geneticist and physician-scientist who led the Human Genome Project, made strides in understanding Huntington's disease by discovering the gene causing it in 1993.
- Several celebrities, such as Katharine Hepburn and Mariah Carey, have not been linked to Huntington's disease or advocacy for it, but others, like Katie Jackson and Sally Pryor, have bravely shared their experiences with the disease.
- Individuals like Tom Isaacs, Sharon Lee Giganti, Elise Faustman, Tim Moynihan, Marianna Palka, and many others have become advocates for Huntington's disease research and awareness, using platforms like social media and blogs to share their stories and raise support.
