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Walkers Take Strides Against Neurofibromatosis

Organizers join Ali Touhey on News 8 at Noon to discuss the third annual walk.
The Lampman family of Rochester, NY, along with individuals and families from across the region, will come together on September 29, 2013 at Perinton Park to raise awareness and funds for treatment of neurofibromatosis (nf). All proceeds from the Rochester NF walk will support the Children's Tumor Foundation's medical research, patient support, and public education programs.

Michelle Lampman organized this NF walk because her son, Ryan, was diagnosed with neurofibromatosis type 1 (nf1) At age two. "Four years ago we were blessed with our son, a blessing we thought would never come our way after years of trying," said Michelle. "When Ryan was six months old, we noticed his many café au lait spots and we knew these weren't just birth marks. After finding possible fibromas, Ryan was tested and the nf1 diagnosis was confirmed.

"We decided that Ryan would be in the best care with NF Specialist Dr. Jennifer Mulbury who immediately set him up with an MRI," Michelle continued. "As it turns out, we are thankful that she did or they wouldn't have caught the optic glioma tumors growing behind his eyes and causing his eyeballs to protrude. Ryan immediately began chemotherapy treatments, once a week for over a year, at the Golisano Pediatric Treatment Center, where I also work."

In addition to the optic gliomas, Ryan has a mass in his spinal cord that is being watched. His quarterly mris indicate that his tumors are slowly shrinking, though, and his spirit is as bright as ever. Ryan is the Lampman family's hero and inspiration; their motto is, "if he can do it, so can we."

NF is a progressive disorder that causes tumors to grow on nerves throughout the body. It affects millions of people worldwide and is more prevalent than cystic fibrosis, duchenne muscular dystrophy, and huntington's disease combined. The disorder can lead to deafness, blindness, bone abnormalities, learning disabilities, and cancer, but nf research is shedding new light on those and other complications as the foundation searches for effective treatments for neurofibromatosis.

"Parents of kids living with NF, like the Lampmans, have proven time and again that they will go to the ends of the earth and do anything to find treatments for their child. If their passion alone could fund nf research, this debilitating disorder would have ceased to exist years ago," said Traceann Adams, Director of the NF Walk program at the Children's Tumor Foundation. "Events like the Rochester walk serve as great opportunities to increase awareness about neurofibromatosis and raise funds to find treatments for those affected."




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