My name is Scott Kimball. My daughter, Rylie was diagnosed with NF2 in 2015 at age 8. Once we, as a family, got past the initial shock of the diagnosis and the multiple fears of the unknown related to NF2, we started down a very lonely path of treatments that mostly consisted of surgical removal of tumors that were threatening Rylie’s health of her spine and brain. What we have learned is that NF2 is very underfunded from a research and development perspective. I have appreciated gaining a relationship with other NF2 parents and families along with the experts in the medical field. The most exciting prospect that I see is gene replacement therapy. A cure is seemingly in reach, and this to me provides a great burst of hope and gratitude. My daughter Rylie is full of life. Her talents flourish and she has a bright future ahead. All this said, we NEED a cure for NF2. I am proud to be the Ambassador for the beautiful state of Utah for NF2 BioSolutions and to meet others willing to join me in raising awareness and funds for this cause.
You can reach me at firstname.lastname@example.org