Thank You to Our DC Advocates

Thank You to Our “Boots on the Hill”

We extend our heartfelt gratitude to Laura Haslam, Christina, Kassandra Thomas, Adam, Max Rosenberg, Don, Karissa, and Diana Haberkamp. Your recent visit to Washington, D.C., from February 4th to 6th, where you engaged with representatives and senators from Illinois and Missouri, exemplifies the collective strength of NF fighters and organizations.

Letters of Influence

We also want to express our heartfelt appreciation to those who penned personal letters that our team delivered. Your words resonate with our members of Congress, emphasizing the urgency and importance of advancing NF research. These letters are powerful tools that amplify our collective voice.

A Billion-Dollar Impact

Since 1996, NF Midwest has been at the forefront of advocating for critical funding through the Congressionally Directed Medical Research Program (CDMRP), administered by the Department of Defense (DOD). Through these concerted efforts with other NF organizations, over $427 million has been directed toward NF research. While calculating National Institutes of Health (NIH) funding specifically for NF research is complex, it likely exceeds this amount. So it’s possible that close to $1 billion has been channeled into NF research since 1996!

The NF Umbrella

It’s essential to recognize that NF encompasses various forms, including NF Type 1, NF2-Related schwannomatosis, and other related conditions. As we continue this advocacy journey, we stand united under the NF umbrella, committed to advancing knowledge, treatments, and ultimately, a cure.

Your Role in the Movement

While we can only accommodate a limited number of advocates on Capitol Hill, we invite everyone to contribute. Here are just SOME ways you can make a difference:

Committees and Planning: Consider serving on committees for program planning, fundraising, and specific events. Your expertise and dedication are invaluable.
Meetings and Input: Participate in meetings where your insights matter. Your presence at support and educational gatherings strengthens our community.
Join Us: In 2024 we want to know you more! Let’s deepen our connections. Join us in any capacity you can—your involvement fuels progress.

Together, We Strive

Together, we strive for a future without neurofibromatosis. Thank you for being champions of hope and change.

University of Chicago NF Clinic Update

Dr. James Tonsgard, longtime neurologist and Director of the Neurofibromatosis (NF) Clinic at the University of Chicago, has announced that he will retire from seeing patients at the end of 2026. Dr. Tonsgard has served as a clinician at the University of Chicago for 49 years and has led a dedicated NF clinic for more... Read More

April 16, 2026April 17, 2026 Diana Haberkamp Clinics/Care

University of Illinois Expands Lifespan NF Care

NF Midwest is pleased to share an important milestone for the neurofibromatosis (NF) community. Dr. Nikolas Mata-Machado and Dr. Stefania Maraka have been added to the NF Clinic Network, a designation by the Children’s Tumor Foundation. We here at NF Midwest are proud of the work that Dr. Mata-Machado and Dr. Maraka began years earlier.... Read More

March 31, 2026April 17, 2026 NF Midwest Clinics/Care