| Advocacy |
Step One - Send us your personal stories
The National Institute of Health and the Department of Defense have long
been a part of the NF research effort. Their funding, however, is determined
on a year-to-year basis. Each new fiscal year, we must convince Congress to
approve a budget that allots adequate support for their work. We begin our
advocacy work in the first months of the year by descending on Capitol Hill
and visiting the offices of our Senators and Representatives to educate them
about neurofibromatosis, NF research and how federal funding for NF
research affects all of our futures. At that time we also bring personal letters
from families with NF to make sure their stories are heard. So when we start
asking around December for your personal stories and letters to your
Senators and Representatives, please send them to us promptly.
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