Your voice has the power to create real change for everyone affected by neurofibromatosis (NF) and schwannomatosis. When we come together to share our stories and speak up for the needs of our community, we can influence research funding, improve healthcare access, and build a brighter future for individuals and families living with NF.

Our Advocacy Priorities

Going to Washington:
Federal Research Funding

We travel to Washington, D.C. as part of the NF Advocacy Network to meet with lawmakers, urging them to support federal research funding for NF through the Congressionally Directed Medical Research Programs (CDMRP) and the National Institutes of Health (NIH). This funding is critical for scientific breakthroughs.

In Our Six States: Visiting Congressional District Offices

You don’t have to travel to make a difference! We empower you to become an advocate in your own community, from meeting with local representatives to sharing your story. Your personal experience is our most powerful tool. Share your story with us today.

Influencing Our Six -State Legislation

NF Midwest is committed to advancing rare disease policies across Illinois, Indiana, Iowa, Kentucky, Missouri, and Wisconsin. We work to ensure our state governments understand and address the unique challenges faced by the NF community.

“Meeting with my representative was so empowering. I was nervous at first, but NF Midwest gave me the confidence to share my family’s story. It felt amazing to know I was making a difference.”

An NF Midwest Advocate

Join Us in Advocacy Work

Let us know of your interest in advocacy work, share your story, request a proclamation from your local mayor and state governor, or write a letter to deliver to Congress. We’ll provide you with all the tools and training you need to be a confident and effective advocate.

Your experience is powerful. Sharing your story is one of the most personal and effective ways to show others the reality of living with NF. It can inspire action, create connection, and show others they are not alone. Stories travel with us to Washington, D.C., appear on our website, are shared on social media, and more!

You can meet with your members of Congress and/or their staff to advocate for issues that are important to the neurofibromatosis community. Arrange an in-district meeting when they are in their local home offices. You can meet in person, or many now can host an online meeting. You can share that you are a constituent and share your personal story with NF. Ask to take a photo, as we’d love to share your efforts!

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Want to Learn More? Contact Jennifer.

Jennifer Bulandr

Director of Programs and Community EngagementJennifer@nfmidwest.org(630) 945-3562 Ext. 3

Advocacy takes more than passion. It takes resources.

Your donation helps NF Midwest show up for the NF community: supporting advocacy efforts, educating decision‑makers, and ensuring the voices of people living with NF are heard.

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