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Neurofibromatosis Midwest



Spring 2016 Neurofibromatosis Midwest Newsletter

This newsletter published in May 2016 features our new logo and a slightly new newsletter design. The highlights of this issue include…

An article on how NF Midwest is leading the fight for better options in treating dermal neurofibromas and the new procedural codes that we helped get approved; the exciting introduction of our new  NF Navigator/Social Worker, Jasmine Read the Rest…

capitol photo

Senate Bill Threatens NF Research


The Neurofibromatosis Research Program (NFRP) is part of the Congressionally Directed Medical Research Program in the Department of Defense (DoD), and funds innovative and cutting edge neurofibromatosis research. Funding for NFRP, as well as many other disorders, will be threatened in the coming weeks as the Senate considers the National Read the Rest…

sera web

Family Matching Your Donation Up to $10,000!

In honor of NF Awareness Month, Sera Leavy and Family have generously pledged up to $10,000 in a dollar for dollar match challenge! They will match any donation of $100 and over to NF Midwest PLUS they will give $100 for each donor who signs up to give a monthly recurring gift  by joining our Monthly Read the Rest…


New NF Navigator/Social Worker: Dedicated to Care!

NF Midwest is truly focusing on CARE and is thrilled to have hired Jasmine Mitchell, a social worker, to support individuals and families in our NF Midwest community.

Jasmine will be a patient navigator who is available to help patients and parents better navigate and understand the complexities of neurofibromatosis. She will be a community Read the Rest…

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New Codes for Removing a High Quantity of Neurofibromas

Leading the Fight for Options in Treating Dermal Neurofibromas:
NF Midwest gets new procedure codes approved.

For two years NF Midwest has been working closely with Dr. Taylor, a father of an adult with NF, to clarify what many call electrodesiccation or what should more accurately be called the electrosurgical removal of neurofibromas in high quantities under general Read the Rest…

2016 Scholarship Applications Now Being Taken

2016 Scholarship Applications Now Being Taken

Are you a student with neurofibromatosis who will be taking college courses in the fall of 2016? This could be you!

“With the financial support of this scholarship, and the boost of confidence, I am passing the courses I have already completed with success. This is huge for me because I am not only completing my Read the Rest…

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be iNFormed – Types of Neurofibromas in NF1

Neurofibromatosis Midwest is pleased to release another article as part of our be iNFormed education initiative.

This short article covers explains the different types of neurofibromas generally found in neurofibromatosis type 1.  It was written for us by James Tonsgard, MD the director of the NF Clinic at the University of Chicago.

Check out the article here and be Read the Rest…

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NF Symposium in Milwaukee

The Children’s Hospital of Wisconsin is holding an NF Symposium on Saturday, April 16th from 8:30 am to 12:30 pm. The cost is $10 per family (patient and parents). It is $32 for additional guests. The fee includes the program, a box lunch, a children’s program and admission the Discovery World.

Please see the Read the Rest…

ltf retreat

2016 NF Family Wellness Retreat in Wisconsin

The Littlest Tumor Foundation is hosting its sixth annual NF Family Wellness Retreat at the Imago Dei Village campground (Clintonville, WI) from August 12th-15th, 2016. Reservations are required.

Open to and designed for children with NF, their siblings, parents and/or caregivers.
Parents can relax and unplug in wellness-centered activities such as yoga, meditation, massage and support circles.
Children 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…

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…


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…