42 Years of Care and Ensuring No One Fights Alone!

20 Million Secured for NF Research!

(5 Million More Than Recent Years)

20 Million Secured for NF Research!

We did it!

We’re pleased to announce that $20 million in federal funding has been secured for the Neurofibromatosis Research Program through the Congressionally Directed Medical Research Program (CDMRP-NFRP) for Fiscal Year 2021. The House and Senate just passed Fiscal year 2021 spending bills including this funding that are now on their way to the President for his signature.

This is $5 million more than many years past! It was made possible due to a tremendous, unified effort that includes many NF organizations; people who have written personal letters and/or called their Senators and members of the House; donors who have supported the work; and volunteers who have personally visited congressional offices.

NF Midwest works together with NF organizations every year, all year long to secure this funding as well as language to support neurofibromatosis research in the National Institutes of Health. This process includes our NF Young Adult (NFYA) leader program which is run collaboratively by The Littlest Tumor Foundation, Texas NF and NF Midwest. The NF Young Adult program brings young adults to Washington DC to learn how to be leaders and how to tell their stories to advocate for research and create change. Our young leaders also hold a briefing to educate Congress about neurofibromatosis and NF research. We’ve found that the stories of young adults told in person by them have great impact.

The process also includes bringing advocates to Washington DC in February to participate in the NF Advocacy Network program and to storm the halls of Congress. Throughout the year we continue to contact members of Congress and to encourage our community to call and email Congress at different phases of the legislation process. NF Midwest and NF organizations have been working to secure federal NF research funding for over 20 years and have been instrumental in generating over $382 million.

We celebrate today thanks to everyone who has supported this effort and the mission of NF Midwest.

Thank you! You did it!

Comments (2)

  • Is there any funding for surgery to remove tumors from Neurofibromatosis, Is there any one I can contact to see if I qualify, for help in having surgery. PLEASE HELP ME!!!

    • There are no funds from NF Midwest for surgery to remove tumors. You may want to check with your hospital to see if there is assistance for people with low income.

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