Our story: Our daughter Flora was born with a gorgeous and unique pattern of birthmarks (called cafe au lait spots) and as a result, before she turned 10 months old, we were sent by our pediatrician to the Boston Children's Hospital Genetics Department, where Flora was diagnosed with a rare genetic condition called Neurofibromatosis - Type 1 (NF-1). After a few additional tests, we were reassured that she had no serious problems in need of surgeries or treatments. However, due to the nature of NF-1, things can change at any time, so she is seen by an ophthalmologist twice a year, and an NF specialist yearly.
We were thankful to be immediately connected with NF-Northeast, the local chapter of the Neurofibromatosis Network, to provide family support and educational materials. We are participating in Steps2Cure NF to raise awareness and support for those affected by neurofibromatosis (NF), a genetic disorder that causes tumors to form on nerves throughout the body. 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!