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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

Camp return 2015

NF Midwest Campers Return!

This year eleven campers and counselors from the NF Midwest region attended Camp New Friends in West Virginia. NF Midwest helped with travel and/or camp tuition for nine of those campers. We also provided support funds to the Brainy Camps organization specifically for Camp New Friends.

Today we greeted eight of the campers and counselors on Read the Rest…

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Telling Your Child About Their Neurofibromatosis

We frequently get asked about how to tell a child they have neurofibromatosis…or whether to tell them at all. Obviously, this is a difficult decision and an important discussion. While we recommend telling and including a child in a way that is appropriate for their age, ultimately it is up to the parents.

Consider though Read the Rest…

NF Midwest T-Shirt

Join Our Monthly Giving Circle – 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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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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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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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…

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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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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Recording – Managing Pain in Neurofibromatosis

In February 2013 NF Mid-Atlantic hosted a webinar on “Managing Pain in Neurofibromatosis”. The speaker was Andrew Tyler Putnam, MD from the Palliative Care Program at Smilow Cancer Hospital.

We’ve provided the recording of the webinar below. This webinar focuses mainly on pharmacological (drug) treatments for pain. It gives a great starting point for understanding the Read the Rest…

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Important Survey

The Department of Genetics at Stevenson University is conducting a survey on the psychological effects of “looking different” which was inspired by NF Mid-Atlantic with their series of interviews on the subject last year.

There has been so little research on the psycho-social ramifications of living with this incurable, variable, often disfiguring, and potentially Read the Rest…

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Recording – Genetics 101

We just came across this excellent 2013 “Genetics 101″ webinar recording from the RASopathies Foundation. The speaker is Beth Hopkins Denenberg, a pediatric genetic counselor.

If you’d like to learn more about genetics you may also find the University of Utah Health Services Tour of Basic Genetics helpful.

Read the Rest…