Celebrating 35 Years

$15 Million in NF Funding Secured for 2017

Thanks to dedication and passionate outreach of our NF community and the generosity of our donors, we are able to announce that $15 million in federal NF research funding to the Congressionally Directed Medical Research Program-Neurofibromatosis Research Program (CDMRP-NFRP) is included in the Omnibus federal funding bill for Fiscal Year 2017.

The CDMRP-NFRP is the NF research program managed by the Department of Defense that provides crucial funding for NF research. In part, the CDMRP-NFRP fuels the NF Clinical Trials Consortium, which works to bring drug treatments to patients. For over 20 years, this funding has been essential to the great strides that have been made in NF research, and it is your participation in the NF advocacy process that has ensured that this funding is secured for the Neurofibromatosis Research Program.

Importantly, this funding is possible because of the collaborative efforts of various NF organizations, whose members have traveled to Capitol Hill and to district offices numerous times this year to meet with key House Appropriations Committee staff and to advocate for continued funding by highlighting the latest developments in NF research, and explaining how these discoveries benefit not only NF patients, but also patients facing other diseases with similar manifestations, and broader issues such as pain management and bone complications affecting our soldiers.

The NF community of patients and families should be proud of this achievement today.  By working together – across organizations, regions, and demographics –  our success means we are together working for improved lives not just for NF patients and members of the military, but across the broader medical research landscape.

Congratulations to all in the NF community for this achievement!

P.S.  We are still working to secure funding for the 2018 budget. Keep an eye out for more information, because we won’t stop advocating, until we end NF!  In order to get involved in the Midwest, visit www.nfmidwest.org. Also we are looking for personal stories to deliver to Congress in February. Please, consider sending us your personal story soon! You can find an example here.

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