Gabrielle Hamilton, a Mamaroneck resident, is a Help 4 HD International Inc. volunteer who has been involved with advocacy and volunteering for Huntington’s disease for a long time. She decided to organize a walk in memory of her mother Jackie, who was afflicted with the disease. “I’ve been growing up at-risk, so it’s been a huge presence my entire life. My earliest memory [of the disease] is visiting my grandmother in a nursing home,” she said.
Hamilton’s grandmother Doris and aunt Penny have also passed away from Huntington’s disease, HD, and her uncle is currently fighting the disease.
HD is a rare, fatal, hereditary brain disorder that causes nerve cells in the brain to deteriorate, impacting people physically, emotionally and cognitively. HD’s symptoms have been described as “having ALS, Parkinson’s and Alzheimer’s—all at the same time,” and can include personality changes, paranoia, forgetfulness and chorea, a neurological disorder characterized by jerky involuntary movements.
There is no cure, and HD can affect those from all walks of life, with symptoms varying from person to person. It has been dubbed “the quintessential family disease,” as every child of a parent who carries the faulty gene has a 50/50 chance of eventually developing HD. There is a genetic test that can tell someone if they will develop the disease or not. Approximately 30,000 Americans are symptomatic, and more than 200,000 at-risk of inheriting it, according to the Huntington’s Disease Society of America, HDSA.
When she was in graduate school, Hamilton, now 37, was president of the New York chapter of HDSA. She has written a book for her son, “Lilco & His Mommy” published in 2008, to help parents talk to their children about illness, particularly HD. She also has a column called Ask Gaby on The Huntington’s Post, a website that provides informative reporting on HD and is linked to Help 4 HD International Inc.
The idea for Jackie’s Walk 4 HD came about last year in March. “I just started thinking that I’d like to do something, finally, where I could raise money,” Hamilton said.
The walk, which took place on Sunday, May 1 in Glen Island Park in New Rochelle, aims to raise money for Help 4 HD International Inc. and two centers: Northwell Health, formerly known as North Shore/LIJ, a clinic that specializes in HD care on Long Island; and Columbia University Medical Center’s HDSA Center for Excellence.
“There’s a lot of research right now in HD because they have found out what exactly causes it,” Hamilton said, adding that the funds raised will benefit anyone at any stage of HD.
According to Hamilton, the walk was a success despite the weather. The event started off with a musical duet, followed by speeches from representatives from Northwell and Columbia University Medical Center. The Rye Neck acappella group performed before participants warmed up for the walk. At the end of Jackie’s Walk, there was a raffle—which raised $827—followed by more local entertainment.
Hamilton was able to spread awareness for Jackie’s Walk, thanks to support and sponsorship from local businesses and Rye Neck High School, which her son attends. “When I spoke to his cross-country coach about HD, she gave him a platform to talk to his teammates about it,” Hamilton said.
As rare as HD is, Hamilton’s son found out that a teammate also has HD in her family. “This little disease that nobody knows about, it’s right there in a team of 15—two people who have HD in their family,” she said.
Hamilton also said that even while she was promoting Jackie’s Walk on Mamaroneck Avenue in the village of Mamaroneck, she discovered that her own optician had a client with HD who also lived in the area.
“There’s been three other examples like that in my community,” Hamilton said, mentioning a woman at a supermarket who said that her sister had just been diagnosed with the rare disease.
Jackie’s Walk 4 HD has a fundraising website that will remain open until early June. As of press time, more than $8,100 has been raised. Visit firstgiving.com/help4hd/jackie-hamilton-walk-4-hd to donate and for more information.
