I had surgery in December 2022 to remove a schwannoma tumor from my spine. I was diagnosed with schwannomatosis in 2023. It’s a type of neurofibromatosis (NF), a rare genetic disorder that results in multiple tumors (called schwannomas) that grow on the coverings of nerves throughout the body and can cause debilitating pain and neurological dysfunction. This can happen anywhere in the body. For me, I have numerous tumors mostly located in my spine and from my hips to my ankles causing intense pain in my legs and feet. I was in a clinical trial in 2024 and am presently in a second clinical trial. Unfortunately, the government in March 2025 decided to discontinue funding for NF research. I’m hoping that I will be able to raise funds to help NF Northeast procure funds to support research for NF.

Every mile I ride brings us closer to better treatments, increased awareness, and a brighter future for those living with NF. Thank you for supporting this important cause!