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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

Neurofibromatosis type 2, or NF2, a disease that causes uncontrolled growth of tumors, has affected 11 members of the extended Francis Barrette family of Clinton. Those battling the disease include, from left, Wendy Buikema, 40, holding a photo of her late mother, Jill Pearson, who was the first to be diagnosed with the genetic condition; Jamie Dornbush, 52, holding a photo of her late brother, Steve Barrette, and Alicia Rogis, 29, holding a photo of the late Francis Barrette, who has since been identified as the NF2 gene carrier in the family. He died of lung cancer in 1990. (Photo by John Schultz; from the Quad City Times)

NF Midwest Family Shares Their Amazing NF Story

When we learned from Jamie Dornbush how many, including her, in her extended family were recently found to have neurofibromatosis type 2 and saw the surgeries that several of them were facing together…we encouraged them to reach out and share their story.

It has been a very difficult year for Jamie and the Barrette family Read the Rest…

be informed for posts-01

be iNFormed – Gene Deletion in Neurofibromatosis-1

Neurofibromatosis Midwest is pleased to release another article as part of our be iNFormed education initiative.

This article covers whole gene deletion in neurofibromatosis type 1 and was was graciously written for us by Heather Radtke, MS, CGC, a genetic counselor from Children’s Hospital of Wisconsin.

Check out the article here and be sure to check out Read the Rest…

2014 Neurofibromatosis Advocacy Group

We Need Your 2015 Personal Stories for Congress

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 Research Program (CDMRP). For more Read the Rest…

Sam Oswald poses on stage with ClusterPluck, one of the bands that performed at SamJam, Unplugged on the Prairie, September 27

SamJam 4NF Raises $22,000 for Neurofibromatosis!

The sounds of progressive bluegrass and contemporary acoustic music filled the air on September 27, as hundreds of people enjoyed a beautiful fall day at SamJam, Unplugged on the Prairie, held at the Macoupin County Fairgrounds.  The 12-hour music event was held in honor of Sam Oswald, Carlinville, who has dealt with Read the Rest…

research

NF Midwest Funded Language Study Results Published

Collaborators from the University of Wisconsin – Dept. of Psychology have published a THIRD paper based on cognitive studies of children with NF1 that has been funded by NF Midwest. This article titled Language in young children with neurofibromatosis-1: Relations to functional communication, attention, and social functioning was published Research in Developmental Disabilities, volume 35, Read the Rest…

Jeanette, Liz and Jenny at the NF Midwest Symposium

Goodbye

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 people that I have become friends with in the NF Read the Rest…

You're a Good Man, Steve Griest!

To 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 inception of Great Steps in Naperville over Read the Rest…