Celebrating 35 Years

We Need Your 2017 Personal Stories for Congress

On February 6th and 7th, 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).

If we want our representatives to care, we need to walk in to our meetings with personal letters from people who have NF or care about someone with NF. This can be anyone…friends, family, neighbors, co-workers, etc.

Please take a moment today to write a letter about how NF affects you or someone you love and to share this with others asking them to write also.

Please create a copy of the 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.



Comments (2)

  • My name is John Giacchino I suffer from neurofibromatosis type 1/NF1. I can’t express how much the importance of the continuance of funding for research for a cure for this genetic disorder. This is a progressive genetic disorder. This genetic disorder is a progressive disorder in which, it can be debilitating to a point where you can no longer work and suffer with all kinds medical issues. I have lost 2 family members due to neurofibromatosis Several years ago several years ago I lost my aunt due to complications of neurofibromatosis type 1. I lost my mother in 2015 due to complications of neurofibromatosis- type 1. I myself have neurofibromatosis type 1. We need all the funding possible so the DOD can help find a cure for this awful genetic disorder called in neurofibromatosis. I hope you vote “Yes” in the upcoming sessions of Congress to continue funding. Thank you very much. My to all my members of the Senate and Representative that represent the state of South Dakota.

    • John, we’re sorry for your loses. NF is a terrible disorder and we all need to do everything we can!

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