Advocate

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.

Advocate at Home

Meet with your members of Congress in District. Join us for our August at home Advocacy Push.

Learn How to Advocate Locally

“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

Our Advocacy Priorities

Going to Washington, DC:
Federal Research Funding

Each year, we travel to Washington, D.C. as part of the NF Advocacy Network to meet directly with members of Congress and their staff. Together, we advocate for strong federal investment in NF research through the Congressionally Directed Medical Research Programs (CDMRP) and the National Institutes of Health (NIH). These conversations help ensure that NF remains a priority and that critical funding continues to drive discoveries, treatments, and hope for our community.

In Our Six States: Local Advocacy in Congressional Districts

You don’t have to travel to Washington to make an impact. We empower individuals and families across our six-state region to connect with their members of Congress right here at home. Whether meeting in district offices, attending local events, or sharing your personal story, your voice helps build awareness and reinforces the need for continued NF research funding. Local advocacy plays a powerful role in shaping national decisions.

Advancing Rare Disease Policy: Federally & By State

In addition to research funding, we advocate for policies that support the everyday needs of people living with NF and other rare diseases at both the federal and state levels. Across Illinois, Indiana, Iowa, Kentucky, Missouri, Wisconsin, and nationally we work with policymakers to advance legislation that improves access to care, strengthens patient protections, and elevates the rare disease community. These efforts help create a more supportive and responsive system for individuals and families.

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!

We have a guide take you through the simple process of meeting your Congressional offices near home. Please use the form to receive it. This will help us help you and know who is contacting what offices.

Get the Guide on How to Advocate Locally

Contact Jennifer for more information.

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.

Support Advocacy