We Need Your Personal Stories for Congress - Neurofibromatosis Midwest

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Neurofibromatosis Midwest

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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! ”
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We Need Your Personal Stories for Congress

Posted By Diana Haberkamp | On January 4th, 2014

NF Midwest Lobbying 2013

NF Midwest Activists in Washington DC in 2013

On February 10th and 11th, 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 go to www.nfadvocacy.org.

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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