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Neurofibromatosis Midwest

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Archive for the “NF News” Category

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Neurofibromatosis Research Helping Scientists to Understand Autism

People with neurofibromatosis type 1 have a higher incidence of many different complications. Tumor growth and learning disabilities are especially prevalent, but NF1 also causes higher rates of bony abnormalities, seizures, pain, aneurysms and much more. For scientists, the mechanisms of NF1 and the NF1 gene offer great incite and understanding into the causes of Read the Rest…

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Welcome to Two New NF Midwest Board Members

We are very excited to have two new warm and passionate bodies join the NF Midwest board last fall.

Ellen Gallagher is a property manager and an active member of the St. Charles community. Ellen brings a great perspective and passion to the NF cause as she doesn’t have a loved one affected by NF Read the Rest…

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NF Midwest Extends Funding on Cognitive Studies

Bonnie Klein-Tasman and her graduate student team from the University of Wisconsin. (L to R) Nathanael Schwarz, Natalie Brei, Bonnie Klein-Tasman, Brianna Yund, and Christy Casnar.

NF Midwest has previously funded studies by Dr. Klein-Tasman’s team that has resulted in valuable information on the cognitive abilities of young children with NF1. This research resulted Read the Rest…

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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…

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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…

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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…

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…