I will be running in my undies this February in honor of my sister, Michelle, and so people like her can have a chance at beating rare cancers related to Neurofibromatosis (NF).
NF is a debilitating genetic disorder that causes tumors to grow all over the nervous system and can cause blindness, deafness, learning disabilities and severe chronic pain. My sister, Michelle, was diagnosed with NF when she was very young. No real symptoms occurred until she was 12 when she started having back and leg pain caused by the plexiform tumors throughout her spine. She was followed by the Children's Hospital of Philadelphia and participated in three different clinical trials. At age 17, one of her internal tumors had transformed into a Malignant Peripheral Nerve Sheath Tumor (MPNST), a rare and aggressive sarcoma that affects about 4% of people with NF. There is no cure for this cancer. On June 5, 2010, Michelle passed away after being diagnosed only 9 months earlier.
Since her death, our friends and family have been running in her honor to raise money for The Michelle Fund (www.themichellefund.org) which supports medical research for NF, provides assistance to those afflicted with NF, and supports charitable organizations providing unique services or benefits to children with life threatening diseases - including the Children's Tumor Foundation.
The Children's Tumor Foundation is fighting to develop treatments and cures for NF, support persons with NF and their families by making thorough and accurate information readily available, assist in developing clinical centers and best practices to improve access to quality healthcare for those who live with NF, and expand public awareness of NF to improve diagnoses, increase understanding of the challenges that NF presents and encourage support for NF research.
You can help by donating or joining our team of undie-clad runners. Your donation will fund the research to find a cure for NF. Together, we can be the difference and #EndNF.