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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

Archive for the “NF News” Category

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…

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…

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…

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!

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

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, Read the Rest…