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We Want to End All Types of NF

By December 29, 2021January 17th, 2024Ways to Give

Schwannomatosis patients like Dale (pictured here) need your help today. Dale was diagnosed with schwannomatosis at age 45. His journey began ten years before his diagnosis, when he had an MRI due to his increasing lower back pain. Two consultations by spinal surgeons misdiagnosed the pain as due to a degenerative disc. Over the next ten years, he tried to ignore his increasing pain and discomfort.

Finally, during a routine doctor visit, his general practitioner urged for updated imaging. Dale agreed, and that’s when tumors were found around his spine. The consulting surgeon had a vague knowledge that the multiple schwannoma tumors could be related to NF. After an internet search, Dale was fortunate to find two nearby CTF NF Clinics, and he was promptly diagnosed with schwannomatosis.

“I chose to live with ever-increasing pain for 10 years before my general practitioner urged me to get new imaging. Finally, I was diagnosed with schwannomatosis, only to discover there is still no FDA-approved treatment for schwannomatosis tumors or the pain they cause. Surgery to remove three tumors has helped reduce the pain levels, but additional tumors and pain persist,” Dale shared with us.

Dale has undergone two surgeries since his diagnosis that reduced his pain, but he still has six known tumors that he and his care team are monitoring closely. Dale has become active as a patient advocate with the Children’s Tumor Foundation, and serves as a patient representative on the Clinical Care Advisory Board. He attends local NF Symposiums, the NF Forum, and CTF’s yearly NF Conference. He has also been a participant at events including his local Shine a Light NF Walk, and Cupid’s Undie Run to raise funds to help find treatments for neurofibromatosis and schwannomatosis.

Together we can find direction and guidance for patients that will bring greater understanding of NF, and decidedly improved clinical care.

Your help will speed the path toward treatments for Dale and thousands more, who are desperately in need of approved treatments for their tumors. Please donate now at