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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

Tim's Gang at our Inaugural Great Steps 4NF walk in Naperville, IL.

Great Steps Origins (Throwback Thursday)

It’s “Throwback Thursday” and Great Steps 4NF season! So today we honor those who had the Great Steps 4NF vision 13 years ago with the first walk in Naperville, IL. Many of those original teams still join us today and new walks and new teams come on every year. Thanks to the desire, determination and Read the Rest…

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Monthly Giving: Keep Hope in Motion

Join the many others who are participating in our monthly giving circle by signing up for automatic monthly donations of $10, $20, $50 or $100.

A monthly donation is a painless, effortless way to support neurofibromatosis and NF Midwest. Your monthly generosity gives NF Midwest a reliable income stream so that we can focus more Read the Rest…

Cares for web

Same Mission: New Way of Saying It

NF Midwest C.A.R.E.S.

If you read our spring 2014 newsletter or our annual review you may have noticed that we have rewritten our mission statement. However, though the text has changed our mission remains essentially the same as it has been for 30 years. We feel this new mission statement clarifies what we do, why Read the Rest…

university of wisconsin

University of Wisconsin Research Collaboration

We are excited and proud to announce our collaboration with the University of Wisconsin-Madison, Biotechnology Center. The UW Biotechnology Center and NF Midwest are currently in the process of establishing new NF research at the University of Wisconsin. This partnership marks a strong step forward in bringing new research techniques and NF awareness to Read the Rest…

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Help Research: Stay in Touch With Your NF Clinic

It is VERY important to visit your “NF clinic” regularly, but if  can’t and it has been a while, PLEASE try to provide that clinic an update of your condition, especially if there have been changes in your health. Having an accurate database of how individuals with NF are affected is important for knowledge Read the Rest…

2013_Review_Front

NF Midwest 2013 Annual Review

A small but mighty and well established organization – NF Midwest is here in the regional community for children and adults with NF and their extended families. And we’ve been here for over 30 years fighting a battle that personally affects us all.

Today we are proud to release our 2013 Annual Review. We Read the Rest…

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Adaptive Behavior in Young Children with Neurofibromatosis 1

NF Midwest has been funding cognitive studies of young children with NF for the last two years. These studies have been lead by Bonnie Klein-Tasman at the University of Wisconsin-Milwaukee. This past fall we saw the results of these studies with the publications of two journal articles by Dr. Klein-Tasman and 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…

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…

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Shop and Benefit Neurofibromatosis

This holiday season you can use one gift to give twice! Buy awareness merchandise from our store or gifts from direct sellers who are donating most of their profits back to NF Midwest. That way your loved one gets a nice present and NF Midwest gets the gift of a Read the Rest…

Donald giving it his all for NF!

RUN 4NF – The Inaugural Naperville Marathon

This Sunday, November 10th is the Inaugural Naperville Marathon in Illinois. NF Midwest is lucky enough to have 18 runners in the marathon dedicated to RUNNING 4NF. Some are running the half marathon, others are running the full 26.2 miles. Some are running at the peak of health, while others are running through some injuries. ALL are Read the Rest…

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NF2 Symposium Transcript from J. Kissil, PhD

At NF Midwest’s annual family symposium held on October 12, 2013, Dr. Joseph Kissil from the Scripps Institute in Florida spoke about current research on the identification and development of therapeutic targets in neurofibromatosis type 2. As part of our continuing effort to keep the neurofibromatosis community iNFormed we have published the Read the Rest…