 Wilmington -
Adding to the myriad of walkers and runners making their way around Horn Pond in Woburn this fall will be a group of people hoping to do more than just get in shape. They will be raising money for neurofibromatosis research.
“I have run in many road races but never coordinated one,” said coordinator Lori Ryan of Wilmington. “I felt there was a need to increase awareness. The disease is not that uncommon, it affects about one in 3,000. It’s not that uncommon yet many people still haven’t heard about it and we want to change that.”
The walk will take place on Sept. 9, starting at 10 a.m. with registration beginning at 8:45 a.m. Though Ryan is encouraging people to pre-register, she said the walk is also open to anyone who stops by that day and wants to walk as well.
The money raised from the walk will go to Neurofibromatosis, Inc., New England in Burlington, a charity whose mission is to raise awareness and find a cure for the disease.
“This is the first year so it’s hard to predict how many runners and walkers we’ll get,” Ryan said. “I’d like to raise $10-20,000 but that might be an ambitious goal for the first year.”
For Linda Yew, a part-time employee of Neurofibromatosis, Inc. New England, participating in the fundraiser was a given, but not because it is her job. Yew’s daughter, Melissa, was diagnosed with NF at a young age, and Yew, a Winchester resident, hopes to help the research and see a cure within her daughter’s lifetime.
“The most helpful thing for me as a parent has been getting involved with NF Inc. New England because you start to learn about illness more than if you were just reading about it online,” she said. “You’re more involved in the research.”
The disease is a progressive, sometimes genetic illness that has many different symptoms which may not show themselves for years, Yew said.
“There’s no way of knowing how or when it’ll show itself,” Yew said. “Right now [my daughter’s] symptoms are mild and we hope they stay that way, but you never know.”
According to Ryan, the disorder affects the nervous system, creating tumors in various parts of the body at any time.
“That’s what makes it such a challenge, the uncertainty of the disease,” Ryan said. “It doesn’t discriminate, it affects people of all ages and it causes a lot of potential and serious problems.”
Ryan stated that the research being done on targeting and reducing the tumors could also help cancer patients as well.
“Part of the purpose of the walk is to educate people,” Yew said. “A lot of people haven’t heard of it and some might have it and not know it. I think we are doing a good job of getting it more publicized.”
As with anything outdoors, Ryan said, there is always the fear of rain. Though she plans to run the fundraiser rain or shine, Ryan said she is hoping for a good day and, therefore a better turnout.
“I’m excited to see it grow,” she said. “Hopefully from here we really grow it into a much bigger event down the road.”
“Steps 2 Cure NF,” will take place on Sept. 9, at Horn Pond. Registration: 8:45-9:45 a.m., walk begins at 10 a.m. For more information, visit www. firstgiving.com/RUNandWalkforNF. |
