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Neurofibromatosis Midwest


Archive for the “NF News” Category


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…


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…

Tracey (3)

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…

be informed for posts-01

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…

Press the Button to ACT NOW!

Add Your Name to Support NF Research!

Last week representatives of NF Midwest, along with members of other NF organizations, stormed Capitol Hill in Washington DC asking for support of NF research in the National Institutes of Health (NIH) and through the Congressionally Directed Medical Research (CDMRP) program that is administered by the Department of Defense (DOD).

We visited your Senators and Representatives and shared Read the Rest…

camp swimming

Camp New Friends 2016

If you have a child with neurofibromatosis, consider sending them to Camp New Friends. Now is the time to sign up or inquire more.

Camp is NOT too costly. For the last 11 years, NF Midwest has financially supported kids from the Midwest to attend Camp New Friends by helping with travel and camp fees.

Camp Read the Rest…

Advocates in February 2015

We Need Your 2016 Personal Stories for Congress

Advocates in February 2015

On February 8th and 9th, NF Midwest executive director Diana Haberkamp and others will be the visiting congressional offices of your Senators and Representatives in Washington, DC to ask for support for NF research through the National Institutes of Health (NIH) and the Department of Defense’s (DOD) Congressionally Directed Medical Read the Rest…