TOLUCA LAKE, Calif. – Kim Robinson, a California mother of a young boy with neurofibromatosis (NF), is a passionate voice for spreading the message about NF, a group of genetic disorders that affects one in every 3,000 people and causes tumors to grow in the nervous system.
On June 3, she and her son, 11-year-old Blake, will participate in the Los Angeles, CA NF Walk at the CBS Studio Center. Along with hundreds of other walkers, they’ll be taking steps to raise funds and awareness of NF, which is more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s disease combined. NF can lead to deafness, blindness, bone abnormalities, learning disabilities, and cancer, but research is shedding new light on those and other complications as the Children’s Tumor Foundation searches for effective treatments for neurofibromatosis.
As an NF Hero, Blake touches the hearts of everybody he meets. Diagnosed at 18 months old, he has undergone numerous brain surgeries and chemotherapy, but the Robinson family remains hopeful. “There is no cure or effectual treatment for this disorder,” said Robinson. “But our family wants nothing more than to end NF, so we’re taking action and asking others to join us in this cause.”
The Los Angeles, CA NF Walk will include live music, raffles, auctions, food, entertainment, a “pooch parade,” and a “Canines in Costume” contest, and will be hosted by NBC Weathercaster Fritz Coleman and NY Jets Placekicker Nick Folk.
To register or donate 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. The Children’s Tumor Foundation funds critical research to find treatments for NF. For more information, please visit www.ctf.org.