Celebrating 41 Years

Share Your Stories for Advocacy

Join us for meetings or provide your NF stories as we meet with Staff from Washington, DC.

Show Your Face or Provide Your Story 4NF

On February 9th and 10th, NF Midwest executive director Diana Haberkamp and others will be VIRTUALLY visiting with staffers of your United States Senators and Representatives to ask for support for NF research through the National Institutes of Health (NIH) and the Department of Defense’s (DOD) Congressionally Directed Medical Research Program (CDMRP). For more information on these programs and our advocacy efforts here. 

We welcome members of our community to join us online at some of these meetings (ie. “show your face”) or to provide personal letters with your NF story for us to share. If you’d like to try attending a meeting please email us at or call 630-945-3562.

Your letters should tell the story of how NF affects you and/or your loved ones and encourage your Representative or Senator to care.

Please create one letter for each of your TWO senators and for your representative. You may look them up at whoismyrepresentative.com. You must also include your address and name in the letter. If possible, include a photo that adds impact. Here is a sample of a letter.

Please, get them to us as soon as possible via one of the options below.


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