42 Years of Care and Ensuring No One Fights Alone!

Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

What We Do
“Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine. We were no longer alone. They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away. Trust me when I say my NF is much easier with them in my corner. ”
-Myshell
Get Involved
“..we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it’s all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. ”
-Sue
Learn
“I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
-Jessica
Events
“{The Walk} was more like a party, than I walk. Enjoyed it so much!” – Kate
News/Blog
“Thanks for giving me information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions than I began with. So once again THANK YOU FOR CARING.” – S.E. Age 29
Support

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

Posted By NF Midwest | On January 12th, 2022

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.

Email to
Mail to NF Midwest, 473 Dunham Rd, Suite 3, St. Charles, IL 60174

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The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.