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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

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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…

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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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…