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Action for Aidan holding two fund-raisers

1.8 from 6 votes
Tuesday, June 03, 2014

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Action For Aidan, a group established to raise money to find a cure for Hunter syndrome, one of seven Mucopolysaccharidoses, or MPS, disorders, will be holding two fund-raising events this month to continue their efforts.

Established in honor of Aidan Carter, a five-year-old boy from Stratham, Action for Aidan has already raised close to $60,000 since beginning this year's fund-raising efforts in February.

The Action for Aidan team hopes that the fund-raising events will happen on a regular basis to raise money for a disease many people don't know about.

"I'm hoping this becomes a bi-yearly or yearly event," said Jen Carter, Aidan's mother. "Hopefully it acts as a reminder of Hunter syndrome and all those boys it affects like my son Aidan."

The events include a 5K walk/run to be held at Exeter High School on June 29, as well as an event at the Community Oven in Hampton on June 16.

After a successful first event, a 5K walk/run in 2011, the group is optimistic about the upcoming fund-raisers.

"We were very successful and raised over $100,000," said Kerri Vivathana, a close friend of the Carter Family. "We are hoping to raise more this time."

Hunter syndrome is rare, occurring in only one out of 170,00 males. Children with Hunter syndrome lack a key enzyme, without which the body can't break down waste products called glycosaminoglycans, or GAGs. The GAGs accumulate and cause disorder to every organ in the body. Life spans of those impacted generally do not last beyond the teens.

Aidan began his battle with Hunter syndrome in 2009, when he was 15-months-old. Since then, he has seen over 10 specialists and had over eight surgeries. Hunter syndrome has left Aidan reliant on hearing aids.

Though Aidan's road hasn't been easy, his parents feel fortunate for what he has been able to do.

"When he was first diagnosed, there was a 70 percent chance he wasn't going to be able to walk or talk right now," Carter said. "Now he's about to graduate kindergarten."

In 2011, Action for Aidan was able to fund two years of study, something Vivathana hopes they can fund more of after these two events.

"Last time, we were able to fund two separate research grants," Vivathana said. "It's not a cure, but it helps. We decided to do it again."

The Community Oven, recently named a "Hidden Jewel" by Phantom Gourmet, will be donating a percentage of all their pizza sales to the funding efforts on the night of June 16. Local celebrities such as Olympian Scotty Lago, and comedian Nick Lavallee will be in attendance. The event will also hold a silent auction with over 50 different items.

The 5K walk/run at Exeter High School will include a performance by "Wayne from Maine," a bounce house and food. All proceeds from both events will go to the National MPS Society, specifically for Hunter syndrome research.

"It's a family fun morning, but really it's much more than that," Carter said. "All the money goes to funding for a disease that doesn't get much attention. People should feel good about where they are giving their money."

To learn more about Aidan's story, and how to provide support for the cause, go to their Web site at

Author: Jack Gilman
Source: Sea Coast
1.8 from 6 votes
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