42 Years of Care and Ensuring No One Fights Alone!

Advocating on Capitol Hill for NF Funding – Lend Your Voice for the Cause

During the week of February 4-6th NF Midwest along with other NF organizations, advocates, caregivers and those with neurofibromatosis (NF) from all over the US will band together to meet with congress to educate and share the importance of continued funding for neurofibromatosis research.

You do not have to be in person on Capitol Hill to have your voice heard. We need you and your loved ones to write your senators and representatives to share your story and ask for support in NF research funding through the Congressionally Directed Medical Research Programs (CDMRP) and the National Institutes of Health NIH.

Anyone can share their experience of NF and how research can make a difference. That means letters can be from friends, family, teachers and so on. Want to write a letter but not sure where to start. Here is an example.

Not sure who your senators or representatives are…no worries we have you covered. You can check here or feel free to email your letters to us and we will do the work for you.

For any questions or concerns please email Sarah, the Care and Outreach Coordinator.

Letter Due by January 31, 2024!

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