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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

Archive for the “Featured Posts” Category

Kids video

Camp New Friends Thank You Videos

Every year NF Midwest funds many kids with neurofibromatosis to go to Camp New Friends in West Virginia. We are only able to do this due to the generosity of our donors.

At the end of December a few of our past campers stopped by the office to say thank you to those donors and Read the Rest…

camp swimming

Camp New Friends 2015

If you have a child with neurofibromatosis, consider sending them to Camp New Friends. Now is the time to sign up or inquire more.

Camp is NOT too costly. For the last 10 years, NF Midwest has financially supported kids from the Midwest to attend Camp New Friends by helping with travel and camp fees.

Camp Read the Rest…

participate in research-01

Survey of Neurofibroma Removal

We are conducting an important survey of patients with NF1 about electrosurgical removal of neurofibromas (dermal (cutaneous)) and/or subcutaneous tumors in high quantities over large areas—“ED” (Electrodesiccation) is a sub-type of electrosurgery.

If you have a lot of neurofibromas, let your concerns about dermal (cutaneous) and subcutaneous neurofibromas, your need for access to surgery, and your Read the Rest…

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…