Joanne Pastel organized the walk because her daughter, Jacqueline, was diagnosed with NF1 approximately three years ago at 4 months of age. The family noticed some faint brown spots on Jacqueline’s skin and inquired about them during a routine pediatrician checkup. Pastel left that appointment with a diagnosis she could hardly pronounce: neurofibromatosis.
“The initial diagnosis was a shock, but after learning more, our family has gotten over being upset. Now our energy is focused on fighting for a cure and educating others about NF,” said Pastel. “Jacqueline is not experiencing any of the debilitating outcomes of NF now, but there’s no cure and no guarantee that it won’t get worse as she gets older. In addition to ensuring the best care for Jacqueline, I want to help others living with the uncertainty of NF. I encourage everyone to join us for the 2012 Minneapolis, MN NF Walk. Help us make a difference in the fight against neurofibromatosis.”
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. However, 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 Dunlap/Pastel family, 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 Minneapolis, MN NF Walk serve as great opportunities to increase awareness about neurofibromatosis and raise funds to find treatments for those affected.”
In 2011, Pastel organized the first Minneapolis, MN NF Walk which was a resounding success with more than 300 participants and over $30,000 raised for Children’s Tumor Foundation research. The 2012 NF Walk takes place from 8 a.m. to noon, and you can find more information and register to participate at www.nfwalk.org/
For more information on the NF Walk Program, please visit: www.nfwalk.org.
About Children’s Tumor Foundation
The Children's Tumor Foundation is a 501(c)(3) not-for-profit organization that is dedicated to improving the health and well-being of the millions of people worldwide living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2 and schwannomatosis. NF causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. NF is under-recognized and under-diagnosed yet affects more people than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined. The Children’s Tumor Foundation funds critical research to find treatments for NF. In addition to benefiting those who live with neurofibromatosis, this research is shedding new light on several forms of cancer, brain tumors, bone abnormalities, and learning disabilities, ultimately benefiting the broader community. For more information, please visit www.ctf.org.
Minneapolis, MN NF Walk Chair
Founder, BurBur & Friends
Director of Communications
Children’s Tumor Foundation
212-344-6633, ext. 7568