Team KJ Fights Huntington's Disease

Jennifer Dunne became friends with Kara Jean Fleming in high school.

In the years since, Dunne has seen about the devastating impact Huntington's Disease has had on her friend's life.

Huntington's Disease is a degenerative brain disorder that took the life of Fleming's father, retired New York City Firefighter Captain Denis P. Fleming. Now Kara Jean Fleming is battling the disease, which is hereditary.

"Her father passed away from it and now she has it," Dunne said. "She's young. She's only 39. Kara Jean is our friend. That is what spearheaded this in the first place.

That led Dunne and a group of friends and family members to form Team KJ, named for Kara Jean, which enagages in fundraising efforts to help find a cure for Huntington's Disease and support members of the community dealing with the disorder. Dunne is the president of the organization, which gained 501c3 tax except status in 2010. Dunne said that research for a cure to Huntington's Disease does not get as much support because the disorder is hereditary rather than contagious.

"It's hereditary, so it doesn't get as much play as some other diseases," Dunne said. "You have to have the gene to get the disease."

Team KJ's big fundraiser is the annual triathlon, which will begins at 8 a.m. this Sunday, Aug. 14, at Camp Buckner in West Point, with between 30 and 40 members participating. This is the third time they have run the triathlon at West Point, also holding at Sleepy Hollow one year.

"It's just nicer," Dunne said of West Point. "We have a lot of people doing it for the first time and they are just friendlier up there."

Former New York Yankee John Flaherty, now a broadcaster, will be participating and the YES Network will be filiming Sunday for a piece on the event, offering the organization greater exposure.

"It's pretty cool," Dunne said.

"He has been great," said Orangetown Councilman Tom Diviny, a member of the Team KJ Board.

There is a family-friendly post-race barbecue at the Pearl River Elks from 2 p.m. to 6 p.m. Sunday. There will be food, drinks, music, a jumpy castle, face painting and a silent raffle. Suggested donation is $30 for adults and children will be admitted for free.

"Everybody who wants to support us can come to the party," Dunne said.

Since 2005, the group has donated over $400,000 to research and to individuals in the community dealing with Huntington's Disease. Over time, the group became an independent charitable organization to have greater control of where the money it raises goes.

"I like it because we can see how we are helping people in the community," Diviny said. "I'm just a small spoke in the wheel. Jenn runs everything. She does a great job."

Team KJ recently made a $40,000 donation to the UC Davis Institute for Regenerative Cures to support the work of Dr. Jan Nolta, director of the institute's stem cell research program. Nolta is working on a medication that would treat the symptoms and slow the progress of the disease. There is no cure for Huntington's Disease at this time.

"She is watiing for FDA approval," Dunne said. "She is so close to having something to treat it."

Huntington's Disease is caused by a mutation in a chromosome which leads to the death of cells in the parts of the brain that control movement and cognitive functions. Though the symptoms are different among individuals, they include the loss of the ability to speak and walk as well as impairing the ability to think.

Technically, it is complications caused by the disease, not the disease itself, that eventually kills somebody with Huntington's Disease. On average, a person with Huntington's Disease will survive 10 to 20 years from the onset.

According to the Team KJ website, one of every 10,000 Americans has Huntington's Disease. The children of people with the disorder have a 50/50 chance of inheriting the gene that causes it.

For more information or to donate to Team KJ, check out the organization's website at http://fighthd.org/