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Neurofibromatosis Midwest


Archive for the “Featured Posts” Category

participate in research-01

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…


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…


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…

scholarship photo

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…

Kids video

Camp New Friends Thank You Videos

Every year NF Midwest funds many kids with neurofibromatosis to go to Camp New Friends in West Virginia. We are only able to do this due to the generosity of our donors.

At the end of December a few of our past campers stopped by the office to say thank you to those donors and Read the Rest…

camp swimming

Camp New Friends 2015

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 10 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…

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Survey of Neurofibroma Removal

We are conducting an important survey of patients with NF1 about electrosurgical removal of neurofibromas (dermal (cutaneous)) and/or subcutaneous tumors in high quantities over large areas—“ED” (Electrodesiccation) is a sub-type of electrosurgery.

If you have a lot of neurofibromas, let your concerns about dermal (cutaneous) and subcutaneous neurofibromas, your need for access to surgery, and your Read the Rest…

2014 Neurofibromatosis Advocacy Group

We Need Your 2015 Personal Stories for Congress

2014 Neurofibromatosis Advocacy Group

On February 9th and 10th, 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…