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Neurofibromatosis Midwest


Archive for the “Featured Posts” Category

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…

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…

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

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 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…

Donald giving it his all for NF!

RUN 4NF – The Inaugural Naperville Marathon

Donald giving it his all for NF!

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 Read the Rest…


Neurofibromatosis Champions Speak Out!

Almost every week we have NF Champions stepping forward and raising neurofibromatosis awareness and asking for donations to NF Midwest. These are ordinary people choosing to do extraordinary things for the NF cause.

Often they raise awareness one group at a time by reaching out and speaking up. They include people like Patrick Z who regularly Read the Rest…

Neurofibromatosis Fighter - Training2Live

Video – Our 2013 Symposium Inspirational Speaker

We are very excited to have a special speaker scheduled for 2013 NF Family Symposium coming up on Saturday, October 12th. DeJuan Evans has NF1 and is an MPNST survivor. More importantly, he is an NF Hero with muscular arms the size of large tree trunks. He not only proves that MPNST can be fought, Read the Rest…

Great Steps cutie

Register for Great Steps 4NF


Join the NF community and participate in a Great Steps for Neurofibromatosis walk.
The Great Steps 4NF Walks include the largest walk for NF in the country in Naperville, IL.
Bring co-workers, friends and family.
Fun and friendship is the theme!
Our loved ones with NF are the center!
Raise awareness and funds by starting Read the Rest…


Registration reopens for the Naperville Marathon

NF Midwest has 9 coveted spots left for the Naperville Marathon or Half Marathon. Registration opens again on March 25 at 9:00 am…but only for charity fundraising runners.

If you want to help families affected by NF while running in the Inaugural Naperville Marathon, give NF Midwest a call!

We have your ticket to this cool race Read the Rest…