Please consider writing to your Senators and Representative in Congress. There are instructions in the Advocacy Toolkit, or just reach out to the NF office. We are happy to help because your voice needs to be heard!
Dr. Tina Kell, a dentist living in Maine who suffers with schwannomatosis, could not join the NF Advocates in DC but wrote the following letter which was hand delivered on her behalf.
The Honorable Senator King
133 Hart Senate Office Building
Washington, DC 20515
Dear Senator King:
As someone closely touched by Neurofibromatosis (NF)/Schwannomatosis, I write to ask your support of two NF research programs. The first request is for funding for the Army’s NF Research Program (NFRP) in the FY2018 Defense Appropriations bill. The second request is for inclusion of report language on NF research at the National Institutes of Health in the FY2018 Labor-HHS-Education Appropriations bill.
I was diagnosed with schwannomatosis about eight years ago at the age of 38. I suffered years of immense pain to the point I couldn’t drive or sit in a chair. I would rock myself uncontrollably to help take my mind off the pain. Unbeknownst to me I had a tumor at the nerve root of C7 in my neck. They are unable to remove it completely for fear of paralyzing me which would make me unable to help others in my practice of dentistry or care for my infant son not to mention just every day activities. To date I have had 3 tumors removed. Every day I struggle with the immense pain inflicted upon me by these tumors as well as the fear that I may have passed this on to my son. I have a wonderful group of physicians that have aided me through this journey, but they can’t do it alone. They need the answers to help patients with NF and schwannomatosis that only research can provide. I plead with you to help our organization by funding the research needed to answer the prayers of the many afflicted with this horrible disease.
The modest investment in NF research has already resulted in major breakthroughs. In addition to providing a clear military benefit, the DOD’s Neurofibromatosis Research Program also provides hope for the 100,000 Americans who suffer from NF, as well as over 175 million Americans who suffer from NF’s related diseases and disorders. We must continue to invest in research and build on the successes of this program if we are to continue to advance towards treatments and cures for NF and the numerous diseases associated with it.
Dr. Tina Kell
Lewiston, ME 04240