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Neurofibromatosis Midwest


NF Midwest Lobbying 2013

The “R” in C.A.R.E.S stands for RESEARCH!

Next week on February 10th and 11th we are going to literally “walk the talk”  and go office to office on Capitol Hill explaining the importance of NF funding to our congressional representatives. As a group of NF activists with the NF Network, we will for the 18th year in a row, take the fight Read the Rest…

Act Now - Red Button

Letters Needed for New Code for Mass Removal of NF Tumors

We have an URGENT request of anyone who is affected by multiple tumors from neurofibromatosis or has a loved one who is. Some of you may have heard of an “electrodessication” procedure that is performed by Dr. Weinberg in New York and a few plastic surgeons in the US. This procedure is different from Read the Rest…

alexander asamoah

New Neurofibromatosis Clinic in Louisville

NF Midwest is excited to have another NF clinic to add to the region. This one is through the University of Louisville. This clinic will see children AND adults. We look forward to working with and supporting the Louisville NF Clinic. You can help support it by fundraising and also by using it and giving us Read the Rest…

camp swimming

Camp New Friends 2014

Having one of the neurofibromatoses (NF1, NF2, Schwannomatosis) is a lifelong challenge. Building a foundation of strength and knowledge; and developing a circle of friends that understand and will always be there, can make a lifelong difference.

Camp New Friends, run by Brainy Camps, is an opportunity for children (ages 7 to Read the Rest…

NF Midwest Lobbying 2013

We Need Your Personal Stories for Congress

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 Read the Rest…

Jacob & Karissa

Welcome To Holland

Many years ago when my children were young someone sent me this essay by Emily Perl Kingsley, the mother of a child with a disability. I found it to be so accurate and inspiring in describing how it feels to discover you have a special child – a child who will Read the Rest…

Marcy Perlman

R.I.P. Marcy Perlman NF Supporter and Board Member

Our hearts are heavy at the loss of Marcy Perlman on December 6, 2013. Marcy was a true NF fighter and simply a wonderful, loving person. A former NF Midwest board member and a strong supporter of the NF cause and community, Marcy had an incredible and positive spirit. She was a constant presence at Read the Rest…