20 Famous People with Huntington’s Disease

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Huntington’s disease is a neurodegenerative condition that damages a person’s brain in such a way that it alters the way they move, think, and behave.

The part of the brain responsible for sorting out the incoming and outgoing signals get affected causing the brain cells in that part to die slowly.

7 out of 100,000 people on the planet are affected by Huntington’s disease. I know this doesn’t seem like a huge number but the mortality rate is growing every year and it might continue until there is a cure for it.

Western Europe, Australia, and Venezuela are some of the countries seeing a rising number of Huntington’s disease cases registered every year.

Usually, we don’t get to hear about Dementia-affected famous people but there are a few celebrities who have taken it upon themselves to inform and educate their fans. 

This post is about a handful such famous people with Huntington’s disease. Note that I am not diagnosing the people I am about to discuss further in the post. Their health status is publicized in newspapers and broadcast on the radio.

Here are the famous people with Huntington’s disease

1. Marianna Palka, Actress

Marianna Bronislawa Barbara Palka, 37, born and brought up in Glasgow, Scotland is a celebrity actress, screenwriter, producer, and director.

At age 17, she moved to New York City to pursue her dream of becoming an actress and joined Atlantic Theater Company as a student.

Unlike most Huntington’s disease patients, Marianna knew that she was at a 50 percent risk of inheriting this fatal disease. She was aware of the fact that someday in the future, the symptoms might just show up.

When she was young, her father, in his 30’s, was diagnosed with Huntington’s disease after showing indications like extreme mental and physical decline.

Besides, her father’s two brothers and mother had suffered from Huntington’s disease as well.

She went for the diagnostic gene test after finding out about her two cousins testing positive for the same test.

In “The Lion’s Mouth Opens”, a short documentary film, Lucy Walker recreates the courageous moments Marianna actually lived while going through the tough period of finding out the results of her genetic test.

2. Woody Guthrie, Journalist, Musician (1912-1967)

Woody Guthrie was an American musician and a celebrity songwriter; well known for his song “This Land Is Your Land”.  Born in Okema, Oklahoma, he later moved to Pampa, Texas, a small town that suffered greatly due to the severe dust storms known as “The Dust Bowl”.

It was due to “The Dust Bowl” that he got sparked to write the song “So Long, It’s Been Good to Know You”. He later relocated to California and eventually to New York.

In the late 1940s, Woody’s behavior became extremely intolerant and violent, which begin to affect his relationships and work. The real cause of his illness was unknown until 1952 when he was eventually diagnosed with Huntington’s disease.

Unable to control his muscles, his condition got worse and he was hospitalized numerous times, and finally took his last breath at Creedmoor Psychiatric Center in Queens Village, New York, in 1967.

Here are some sweet lyrics from his song “Do Re Mi”.

California is a garden of Eden, a paradise to live in or see,
But believe it or not, you won’t find it so hot
If you ain’t got the do re mi

3. Trey Gray, Drummer

Trey is a successful drummer in a band called “Brooks and Dunn”. Born in Indianapolis, IN, USA, he had a passion for music since childhood.

He worked as a drummer with the celebrity country singer “Faith Hill” for seven glorious years.

At age 30, Trey’s future looked very bright and he was getting ready to take his drumming career to the next level.

But unfortunately, he hit a bump in the road when he found out about his uncle and later mother were diagnosed with a rare genetic disease called Huntington’s disease.

In 2003, Trey’s gene test results came out to be positive but the drummer showed courage and continued to work with the band “Brooks and Dunn”.

In an interview with Brent Weber of Oklahoma City’s Fox 25 Morning News, Trey expressed gratitude for what he has experienced up till now and the success that he has had.

He said, “I have had an unbelievable life and I feel very blessed.”

He has been a real inspiration for those suffering from Huntington’s disease and is willing to make the best out-out this one precious life.

4. Charles Sabine, Journalist

Charles Edward Sabine is a celebrity journalist who worked for NBC news for more than two decades. He is an OBE (Officer of the Most Excellent Order of the British Empire). 

Currently, he is a global spokesman for people suffering from Huntington’s disease. He is also very active in spreading awareness about this hereditary condition. Charles was diagnosed with the Huntington’s gene in 2006.

Charles has lost a handful of his blood relatives to Huntington’s disease (including his father and brother). Charles knows that there’s no cure for this disease, but he lives his life with a positive attitude.

Recently, he gave a brilliant speech on the same subject in Basel, Switzerland in recognition of World Rare Disease Day.

Following are some lesser known celebs with HD:

5. Nancy Wexler

The American geneticist is known for her pioneering work in the study of Huntington’s disease. Her mother was diagnosed with the disease, which inspired Wexler to devote her career to finding a cure. She is the president of the Hereditary Disease Foundation.

6. Sharon Lee Giganti

The American actress and model was diagnosed with Huntington’s disease in her 30s. She became an advocate for research into the disease and wrote a book about her experiences called “A Patient’s Point of View: Living with Huntington’s Disease.”

7. Chris Furbee

The American artist was diagnosed with Huntington’s disease in his 30s. He continued to create art despite the disease’s impact on his motor skills. His work has been exhibited in galleries across the United States.

8. Katie Moser

The American soccer player was diagnosed with Huntington’s disease in her 20s. She continued to play soccer until the disease made it impossible for her to do so. She became an advocate for research into the disease and established the Katie Moser Foundation.

9. Corey Carrier

The American actor, best known for his role in the television series “The Adventures of Young Indiana Jones,” was diagnosed with Huntington’s disease in his 20s. He has continued to work as an actor and has spoken publicly about his experiences with the disease.

10. Jeff Carroll

The American scientist and writer was diagnosed with Huntington’s disease in his 20s. He became an advocate for research into the disease and has written about his experiences with the disease in his book “Surviving Huntington’s Disease.”

11. Katie Jackson

The American musician was diagnosed with Huntington’s disease in her 20s. She continued to make music despite the disease’s impact on her motor skills. She died in 2017 at the age of 33.

12. Tom Isaacs

The British advocate for Parkinson’s disease was also diagnosed with Huntington’s disease. He founded the Cure Parkinson’s Trust and became an advocate for research into Huntington’s disease as well.

13. Tim Moynihan

The American musician and writer was diagnosed with Huntington’s disease in his 40s. He has written about his experiences with the disease in his book “Hurry Down Sunshine.”

14. Ruth Macklin

The American bioethicist was diagnosed with Huntington’s disease in her 60s. She has written about her experiences with the disease in her book “Changing the Landscape of Euthanasia.”

15. Sally Pryor

The Australian journalist was diagnosed with Huntington’s disease in her 30s. She has continued to work as a journalist and has spoken publicly about her experiences with the disease.

16. Adam Hayden

Hayden was a young father and husband who was diagnosed with Huntington’s disease at the age of 30. His family has documented his journey on a blog, “HD in the Heartland,” to raise awareness about the disease.

17. Wendy Mitchell

Mitchell is a British author who was diagnosed with Huntington’s disease in 2014 at the age of 58. She has written a memoir about her experience, “Somebody I Used to Know.”

18. Elise Faustman

Faustman was a prominent attorney and advocate for HD research who was diagnosed with the disease in 2004. She passed away in 2018.

19. Carl Zimmerman

Zimmerman was a successful businessman and philanthropist who was diagnosed with Huntington’s disease in 2006. He and his wife have since become advocates for HD research and funding.

20. Lauren Holder

Holder is a young woman who was diagnosed with Huntington’s disease in 2016 at the age of 23. She has become an advocate for HD awareness and research and has shared her journey on social media.

Final thoughts

These famous people, along with countless others, have bravely shared their stories and struggles with Huntington’s disease in order to raise awareness, advocate for research funding, and support others who are affected by the disease. Their courage and resilience are an inspiration to us all.