We Need Your 2016 Personal Stories for Congress - Neurofibromatosis Midwest

42 Years of Care and Ensuring No One Fights Alone!

Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

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“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
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“..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
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“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
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“{The Walk} was more like a party, than I walk. Enjoyed it so much!” – Kate
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“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
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We Need Your 2016 Personal Stories for Congress

Posted By NF Midwest | On January 4th, 2016

On February 8th and 9th, NF Midwest executive director Diana Haberkamp and others will be the visiting congressional offices of your Senators and Representatives in Washington, DC 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.

What we need from you are personal letters to take to your representative and senators. These letters should tell the story of how NF affects you and/or your loved ones and encourage your congressman/woman 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 you can 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.

Mail to NF Midwest, 473 Dunham Rd, Suite 3, St. Charles, IL 60174
Email to
Fax to 630-689-1213

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