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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

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New NF Midwest Scholarship Program

The NF Midwest Board has voted to start a Scholarship Program with funds left to NF Midwest through a charitable trust by Francis and Irma Napolilli.

One-time scholarships of $1,000 will be awarded annually to people with Neurofibromatosis (NF) to further their higher education in undergraduate, vocational or graduate studies. Scholarship applicants must have a Read the Rest…

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be iNFormed – Dr. Chang’s NF2 Symposium Transcript

At our annual symposium on October 25, 2014 Long-Sheng Chang, Phd from The Research Institute at Nationwide Children’s Hospital and Ohio State University College of Medicine presented on the Mutations and Biological Behavior of NF2-Associated Schwannomas and Meningiomas and Potential Therapies.

We have now uploaded a transcript from Dr. Chang’s presentation.

Transcript

 
 

Be sure to check 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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Volumetric Measurement of Tumors in Neurofibromatosis

At NF Midwest’s annual symposium in October 2014 we invited Eva Dombi, MD, from the National Cancer Institute to present information about how a newer technology called volumetric measurement is used to measure tumors in neurofibromatosis. The transcript from her presentation is now available online on our website.

What is Volumetric Read the Rest…

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NF Midwest Extends Funding on Cognitive Studies

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 in the publication of four papers and a poster honored at the NF Conference.

This new funding will allow them to follow-up on the psychosocial and cognitive functioning Read the Rest…

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be iNFormed – Transitioning to Adult Care

At our annual symposium on October 25, 2014 Dr. Parag Shah of Lurie Children’s Hospital and LaRabida Children’s Hospital spoke on Transitioning to Adult Care. Because neurofibromatosis is a lifelong and complicated disorder this is an especially important topic. It is critical that as children with NF become adults they are able to take responsibility for 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…

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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…

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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…

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Monthly Giving: Keep Hope in Motion

Join the many others who are participating in our monthly giving circle by signing up for automatic monthly donations of $10, $20, $50 or $100.

A monthly donation is a painless, effortless way to support neurofibromatosis and NF Midwest. Your monthly generosity gives NF Midwest a reliable income stream so that we can focus more Read the Rest…

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University of Wisconsin Research Collaboration

We are excited and proud to announce our collaboration with the University of Wisconsin-Madison, Biotechnology Center. The UW Biotechnology Center and NF Midwest are currently in the process of establishing new NF research at the University of Wisconsin. This partnership marks a strong step forward in bringing new research techniques and NF awareness to Read the Rest…

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NF Midwest 2013 Annual Review

A small but mighty and well established organization – NF Midwest is here in the regional community for children and adults with NF and their extended families. And we’ve been here for over 30 years fighting a battle that personally affects us all.

Today we are proud to release our 2013 Annual Review. We Read the Rest…

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Neurofibromatosis Champions Speak Out!

Almost every week we have NF Champions stepping forward and raising neurofibromatosis awareness and asking for donations to NF Midwest. These are ordinary people choosing to do extraordinary things for the NF cause.

Often they raise awareness one group at a time by reaching out and speaking up. They include people like Patrick Z who regularly Read the Rest…