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Neurofibromatosis Midwest



Awareness Color for Neurofibromatosis

At NF Midwest we are frequently asked what the “awareness color” is for neurofibromatosis for use in ribbons, etc. So we’re going to attempt to set the record straight!

First, understand there is no all-powerful, divine being that bestows awareness colors. Also, as far as we know there has never been any sort of agreement Read the Rest…

Press the Button to ACT NOW!

Voice Your Support for Neurofibromatosis Research

The House of Representatives is in budget negotiations and we need people to contact their Congressman NOW and ask them to include $15 million for the Peer-Reviewed Neurofibromatosis Research Program (NFRP)

Please call or email your Congressman directly…or if you don’t have time for that, the NF Network has set-up an easy petition site that only Read the Rest…

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Participants Needed for NF1 Study on Coping with Pain

 Coping with Pain: an ACTive Approach


Do you have NF1 and one or more plexiform neurofibromas?
Do you have pain that has lasted three months or more?
Are you between the ages of 16 and 34 years?


If you answered yes to all these questions, you may be eligible for a new study at the National Cancer Institute in Bethesda, Read the Rest…

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Consider One Final Gift

Our fiscal year is coming to an end on September 30.

Your generosity in our fiscal year 2015 dictates what programs we are able to fund in 2016 budget which we are planning now.


Please consider one final gift for FY2015, or better yet,


by setting up a small automatic monthly giving donation.


You can donate Read the Rest…


25th Symposium and (new) iNFo Fair

Our 25th Annual Neurofibromatosis Symposium is scheduled for Saturday, October 24th and new this year, it will include an iNFo Fair!

The NF Symposium and iNFo Fair will feature short presentations on various subjects designed to inform and

help improve the lives of those with neurofibromatosis.  There will also be tables with extra information manned by Read the Rest…


be iNFormed for Teachers

School is starting! If you have a child with neurofibromatosis type 1 you might find our be iNFormed article NF1 Information for Teachers helpful.

 This article is specifically meant as an aid for teachers and was generously provided to us for duplication by the British Columbia Neurofibromatosis Foundation (BCNF).

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…

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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…


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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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…