Celebrating 35 Years

NF Midwest Advocacy Program

$15 Million for NF Research Thanks to Grassroots Efforts and the NF Midwest Community

The efforts of our community, our donors, and the advocacy of NF Midwest (and other NF organizations) all worked together so that today we can celebrate another $15 million in NF research dollars through the CDMRP-NFRP.

We fight for this funding every year and for language supporting research through the National Institutes of Health. NF Midwest targets the Representatives and Senators in our region with a grassroots campaign. Work for this round of funding for the fiscal year 2018 began in December of 2017 with requests for letters to deliver personally to your members of Congress.

We collect these letters through January. In February we bring volunteers and join people from other regions to personally visit every office in the House and the Senate. Over two days we meet with legislative aids and tell them about neurofibromatosis and schwannomatosis; the importance of research; and how federally funding for research impacts research.

Once we are back the work doesn’t end. We follow-up with the aids of every office, thanking them for their time and providing material again. When “Dear Colleague” letters are circulating or a vote is pending we contact them all at least once more. We also work with the community, asking them to contact their members of Congress.

This is a constant process and it is the “squeaky wheel that gets the grease”. We thank our donors for making this work possible and we thank the NF community for making their needs known and raising their voice! The NF Midwest community is incredible and played a role in getting this funding!

Unfortunately, the battle starts again every year and this round of funding for Fiscal 2018 is actually late in coming. This past February when we went to Washington, DC it was for the FISCAL YEAR 2019 and we are doing this work now. So please don’t let up. If we ask you to call or write, please do! We’ll keep you posted!

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