Using Grassroots Tactics to Fight a Rare Disease

Sep 14, 2008 10:12 AM. All work by , ,

BOSTON—In March, Webster resident Jennifer Tonelli learned she had a "fifty-fifty" chance of developing Huntington’s disease — a genetic, crippling illness that attacks the brain and nervous system. But instead of waiting in wonder, Tonelli has pooled her resources and raised over $17,000 in the past five months for HD research.

"I wanted to do something immediately positive to get my mind off the challenges," said Tonelli, who was one of over 100 participants in the three mile Walk-a-Thon for Huntington’s Disease held yesterday morning at the Artesani Park in Brighton.

"[The event] has given me hope that I can do something," said Tonelli, "that I am not completely helpless against this disease."

According to an event volunteer, the 35-year-old Tonelli has blown past other participants with her determination. Tonelli has organized silent auctions, sponsorships and her own Heart for Hope benefit, a wine tasting event held on Thursday evening at the DZian Gallery in Worchester.

Tonelli said that the disease was a "brick wall" that changed her perspective on life. Since then, she has been working fervently with Virginia Goolkaian, the regional manager of the Huntington’s disease Society of America in New England. It was Goolkasian who helped Tonelli get involved in the fight against HD.

Goolkaian has organized fund-raising and outreach events throughout the region in the past few years. From hoop-a-thons to golf tournaments, Goolkasian is reaching out to all her resources to get the word out and bring money in. Although she and one other woman are the only HDSA staff, Goolkasian is backed by a growing army of volunteers. These emissaries of HD bring the message to their friends, workplaces and neighborhoods — spreading the word to heighten awareness and support.
"There's [a supporter] who's married to someone in Pearl Jam," said Goolkasian, proudly, "people go to co-workers, families — people they know."

Just recently, Goolkasian has gained support from documentary filmmaker Ted Bogosian, whose newest movie, titled "50/50", directly addresses the hardships of Huntington’s disease. The project was recently endorsed by Danny DeVito, who Goolkasian says she is "working on" recruiting.

But Goolkasian and Tonelli aren't the only ones bringing in money. Lindsey Tanner, one of the seven walk-a-thon committee volunteers, said she raised roughly $1,100 within the past three months. Tanner said that even her mother-in-law has gotten involved by sparking a partnership with Harley Davidson. It is now rumored that the motorcycle magnate will be present at a fundraiser "in the works" near Worcester.

"It's just by word of mouth," began Tanner, "but I think we're doing really well."

Neurologist and HDSA supporter Dr. Jang-Ho Cha has been teaming up with Goolkasian to get closer to a cure. Cha is a researcher at Massachusetts General Hospital and specializes in neurological diseases like Huntington’s.

Cha said that he was amazed at how much influence fundraisers like the walk-a-thon have done for HD research. According to Cha, about half of his lab's research budget comes from small-town contributions made by people like Goolkasian, Tonelli and Tanner. Because donation money does not have the same spending restrictions that federal grant money requires, Cha said his lab has the freedom to investigate innovative solutions.

"We wouldn't be able to do [experiments] without this type of money," said Cha, "the same old stuff isn't going to get us there."

But even the money that Goolkasian, Tonelli and Tanner have raised is not enough to cure the disease. Cha emphasized that time, money and awareness about the disease are the real secrets to stopping HD. Although Cha said that a solution may not come in the next several years, he is confident that research is moving in the right direction.

"We're clearly not where we need to be," admitted Cha, "[but] it really is true that there's a lot of progress."

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