We Need Your Letters to Protect NF Research Funding - Neurofibromatosis Midwest

43 Years of Care and Ensuring No One Fights Alone!

Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

What We Do
“Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine. We were no longer alone. They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away. Trust me when I say my NF is much easier with them in my corner. ”
-Myshell
Get Involved
“..we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it’s all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. ”
-Sue
Learn
“I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
-Jessica
Events
“{The Walk} was more like a party, than I walk. Enjoyed it so much!” – Kate
News/Blog
“Thanks for giving me information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions than I began with. So once again THANK YOU FOR CARING.” – S.E. Age 29
Support

We Need Your Letters to Protect NF Research Funding

Posted By Diana Haberkamp | On January 14th, 2025

Once again, NF Midwest advocates will be in Washington, DC, to urge our Senators and Representatives to continue supporting research for NF, including neurofibromatosis type 1, NF2-related schwannomatosis and other schwannomatosis. This year we will be there February 2nd – 4th.

TWe’re collecting letters to hand-deliver to your representatives in Congress. Please share your story with your senators and representatives to emphasize the importance of continued NF research funding through the Congressionally Directed Medical Research Programs (CDMRP) and the National Institutes of Health NIH.

Anyone can write a letter—whether you’re directly impacted by NF or a supportive friend, family member, teacher, or ally. Your experience and voice matter! Not sure where to start? We’ve got an example letter to help guide you.

Not sure who your senators or representatives are? No worries! You can check whoismyrepresentative.com, or simply email your letters to us—we’ll take care of figuring out who your rep is and delivering them for you.

For any questions or concerns, feel free to email Diana. Let’s work together to protect critical funding for NF research!

Letters are Due by January 29, 2024!

Leave a Reply Cancel reply

<< View More

Great Non Profits Badge

GuideStar Exchange

Donate

© 2025 Neurofibromatosis Midwest - non profit 501(c)(t3). Site Map - Privacy Policy
The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.