I am participating in Steps2Cure NF to raise awareness and support for those affected by neurofibromatosis (NF), a rare and debilitating disease that causes tumors to form on nerves throughout the body. One of the approximately 154,000 Americans living with NF is my eight-year-old daughter Julia. In her young life she has has already faced multiple medical interventions and treatments, including surgery and chemotherapy. She suffers from high blood pressure, chronic pain, balance issues and fatigue, and often travels far to meet with the numerous medical specialists providing her care. However if you know Julia, you have seen first-hand she does not allow this disease to slow her down. This happy, spunky and active little girl loves the outdoors and playing with friends as well as spending time with her brother Noah and her dog Enzo. She often says she was ‘born a fighter’. While NF is certainly Not Fair, she inspires us to live our lives ‘Julia Strong’.
The money raised will support the mission of NF Northeast, funding patient support programs, advocacy efforts, and cutting edge research, and will provide hope and help to individuals and families impacted by NF. Every step we take brings us closer to better treatments, increased awareness, and a brighter future.
Thank you for your support!
Allison D’Ottavio