Neurofibromatosis, abbreviated as NF, is a misunderstood and often misdiagnosed genetic condition that occurs in one in 2,500 births, making it more common than cystic fibrosis and muscular dystrophy combined. The condition affects both sexes and all races equally, and symptoms include coffee-colored spots on the skin, learning disabilities, deafness, blindness, paralysis, and painful internal and/or external tumors.
NF is often called a cousin to cancer because of the erratic cell growth that causes tumors to grow in or on a person’s body, and much of the research that is done on NF is conducted at the National Cancer Institute. NF is variable and unpredictable with some patients having mild cases and some having severe health challenges.
Karen Peluso, of Lynnfield, whose daughter has NF, has a natural inspiration to fight for a cure. She began raising funds for NF in a volunteer capacity and was hired 15 years ago as the Executive Director of Neurofibromatosis, Northeast, in Burlington. She has a master's degree in nonprofit management from Cambridge College. The organization's mission is to find a cure for NF, increase awareness, and provide support for NF patients and their families.
"My daughter is doing very well," Peluso said. "When she was nine, she had internal tumors throughout her body, was very sick for a long time, and had reconstructive surgery. But, she tries not to make NF a part of her life. She has a wonderful story - she went on to college and works at a law firm in Boston. She is a deep sea diver as a hobby."
Back then, nearly 30 years ago, doctors weren't as informed about NF and often misdiagnosed the genetic condition.
"We were fortunate the doctors identified it," Peluso continued. "It was before we could do a Google search on the Internet, so there was very little literature about it."
Linda Yew, of Winchester, is Executive Associate and Outreach Coordinator in the Burlington office, and is the mother of a 14 year old daughter who has NF. One of her main duties at NF Northeast is to provide information for newly diagnosed patients or their parents, assist with medical referrals, and makes introductions to other NF families. Linda joins Karen and many other NF advocates in lobbying Congress for funding in Washington, D.C.
Like Peluso, she volunteered for three years before she was hired in 2006 to work part-time. Before that, she was an insurance consultant in San Francisco, CA where her daughter was first diagnosed. She became aware of NF Northeast shortly after she moved to Massachusetts in 2001. "My sister lives nearby," Yew explained, "She saw a newspaper article about a mini golf and pizza party organized by the non profit, and gave me the contact information for Karen. I was then introduced to other parents of children with NF, and attended some of the events.”
Yew told Lynnfield Patch, "May was NF Awareness Month, with the intent of making the illness a household word by educating the public about Neurofibromatosis.” Pictured below, Karen Peluso met with Governor Deval Patrick at the Statehouse in Boston to sign a yearly proclamation to officially make May NF Awareness Month.
Upcoming fund-raising events that the organization has planned are:
27th Annual Golf Tournament, Monday, June 18th, at The International Golf Course. Former Red Sox great Dwight Evans and his wife Susan are Honorary Chairpersons.
Coast to the Cure Bike Rides, Saturday, Sept. 8, in Ipswich. A Road Course begins and ends at Crane Beach in Ipswich, and a Mountain Bike Challenge will take place at Willowdale State Forest.
Steps2Cure NF - walk and road race, Sunday, Oct. 14, at in Wakefield.
For information about these events, click here.