Photos and text used with permission of
Jerry Patterson and Family.
Jerry Patterson's first experience with Neurofibromatosis (NF) occurred approximately 3 years ago when his granddaughter Leah, then 7 years old, was diagnosed with NF2. Since being diagnosed, Leah has endured 3 major surgeries including one surgery to remove a large tumor impinging on her spinal cord, a second surgery to fuse her cervical vertebrae, and a third surgery to remove one of her 6 existing brain tumors.
After Leah's initial diagnosis, Jerry attended a symposium to learn more about NF2 and to evaluate the current available treatment options. At the symposium, Jerry became familiar with Neurofibromatosis, Inc., Northeast; following discussions with members of the group, he dedicated himself to actively support their goal of finding a cure for NF. Currently, Jerry's family and friends are committed to becoming more knowledgeable about NF2, raising money to support NF research, and increasing the public awareness of this disorder.
Of his service as a Fiscal Year 2010 Neurofibromatosis Research Program (NFRP) Consumer Peer Reviewer, Jerry reflects that "it was truly a privilege to sit on a panel with such a distinguished group of scientists and dedicated advocates. Serving on the panel as a Consumer Advocate was truly rewarding and enriching. I learned so much about NF and the dedicated researchers working so diligently to find a treatment or cure for NF. To have the opportunity to preview the future areas of research was personally enlightening, and very rewarding to do so, on behalf of all NF patients and their families. The NFRP is such a unique program, bringing together NF families, scientific reviewers, and the front-line researchers, all united in the quest to find a cure for Neurofibromatosis."
Last updated Wednesday January 27 2016