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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

back-to-school

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…

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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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…

birdies_for_charity

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…

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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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…