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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

NF Awareness month 2015 2-01-01

Spread the Word in May!

May is Neurofibromatosis (NF) Awareness Month and Sunday, May 17th is NF Awareness Day.

While the NF cause needs you in every season, every month and every day, May provides a great reason to really spread the word NEUROFIBROMATOSIS.

If you’re comfortable and able, this is a great time raise awareness by sharing your NF story Read the Rest…

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be iNFormed – Seizures in Neurofibromatosis-1

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

This short article covers seizures in neurofibromatosis type 1 and was was written for us by Nikolas Mata-Machado, MD the director of the NF Clinic at Loyola University in Chicago.

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

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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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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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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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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…

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…

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…