Lincoln is the epitome of love. He is a kind, caring, and compassionate 7 year old that humbles us each day. At the start of 2024, after an annual phsical led us to Oshei Children's Hospital in Buffalo, NY, our guy was diagnosed with neurofibromatosis (NF). NF is a genetic disorder that causes tumors to form on nerves throughout the body. Since his diagnosis, we have learned that Lincoln currently has two small tumors along the spine in tandum with a cyst on the brain, mild chiari, and autism spectrum disorder. With these findings comes many trips to to see his specialists often and MRIs every few months. We hope to use our new discovery and exposure as a tool to educate others about rare genetic condition and advocate for those with learning delays and disabilities.
This disorder impacts lives of thousands, often leading to painful tumors, physical and learning disabilities, and other significant challanges. Currently, there is no cure for NF. This is why I am participating in Steps2Cure NF to raise awareness and support Lincoln - our son, grandson, nephew, friend; and for all those affected by neurofibromatosis (NF). The money raised will support the mission of NF Northeast, funding patient support programs, advocacy efforts, cutting edge research, and will provide hope and help to individuals and families impacted by NF. Every step I take brings us closer to better treatments, increased awareness, and a brighter future-thank you for your support!