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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

NF Midwest T-Shirt

Join Our Monthly Giving Cirlce – Get a FREE T-Shirt

Join our Monthly Giving Circle  and for a limited time you may receive a FREE NF Midwest Neurofibromatosis Fighter T-Shirt!

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 of our resources on Read the Rest…

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Sign-Up for July 29 Neurofibromatosis Type 2 Webinar

The NF Network will be presenting an all new webinar on Hearing Preservation/Rehabilitation in Neurofibromatosis Type 2 on July 29th.

The presenter will be Derald E. Brackmann, MD, a Neurologist with House Clinic in Los Angeles.

Learn More

In case you’ve missed the webinars presented by various organizations over the years, we currently have eighteen available on NF Midwest’s website.

Read the Rest…

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Neurofibromatosis Midwest Announces New Board Member

Neurofibromatosis Midwest is pleased to announced the appointment of Peter Oswald, Carlinville, IL, as a new member of its Board of Directors.

“Peter Oswald brings a great spirit of commitment and marketing expertise to our organization,” noted Diana Haberkamp, Executive Director of NF Midwest. “We are fortunate to have him join our board as we continue Read the Rest…

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Chicago Neurofibromatosis Family Day

Join us Saturday, September 5th!

Make your plans now to join NF Midwest on Saturday, September 5th in Geneva, Illinois for food, baseball, fireworks and more!

This is a day for NF individuals, family and friends to meet, socialize and have some fun!

 

Here’s the schedule of fun:

3:00 –  Gates Open

4:00 to 5:30 – Enjoy a pre-game Read the Rest…

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Win A Lease on a Lexus and Help Neurofibromatosis!

Here’s an event you can participate in from your couch and possibly win a two year lease on a 2015 Lexus NX! For John Deere’s Birdies for Charity all you need to do is make a pledge and guess at the number of birdies that will be made during the John Deere Classic.

A two year lease Read the Rest…

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Wilburns Doin’ It 4NF!

So far this year we’ve had all sorts of wonderful people and groups coming forward and Doin’ It 4NF! There are so many that we can’t possibly highlight them all, though we will certainly try!

This past weekend the Wilburn family and their friends had a “Chuck-A-Luck” booth at Valley Days in Valley Park, MO. Read the Rest…

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Children 9-13 with NF-1 Needed for Study

Bonnie Klein-Tasman, Ph.D and her team at the University of Wisconsin-Milwaukee are looking for children ages 9 to 13 with NF-1 to participate in a quick research study. The study will take about 4.5 hours and will help researchers learn more about the social, cognitive, and emotional abilities of children with neurofibromatosis-1.

It’s preferred that 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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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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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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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…