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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

Archive for the “Featured Posts” Category

2014 Neurofibromatosis Advocacy Group

We Need Your 2015 Personal Stories for Congress

2014 Neurofibromatosis Advocacy Group

On February 9th and 10th, 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 Read the Rest…

Jeanette, Liz and Jenny at the NF Midwest Symposium

Goodbye

Jeanette, Liz and Jenny at the NF Midwest Symposium

Today is a sad day for me, my last day at NF Midwest. I have taken a position closer to home, allowing me to spend more time with family and (hopefully) see most of my son’s bowling meets. I will truly miss all the wonderful Read the Rest…

You're a Good Man, Steve Griest!

To a Good Man – Steve Griest!

You’re a Good Man, Steve Griest!

We love and appreciate ALL of our volunteers and supporters, but we are especially in awe and inspired by those very exceptional ones who take an extra-large step forward even though they have no family with neurofibromatosis.

Steve Griest has been one of these truly special supporters. Since the Read the Rest…

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…