Researchers at Indiana University are creating a survey on how having NF1 affects people’s health and well-being. This tool will become an important part of testing potential treatments for NF1.
Who can participate?
Young Adults with NF1 (18-25y)
Children with NF1 (5-17y) (with parent permission)
Parents of children with NF1 (5-17y)
What will I be asked to do?
We are asking Read the Rest…
Aydin and mom and dad.
Four years ago my granddaughter Aydin was diagnosed with neurofibromatosis or NF. To be perfectly honest, I had no idea what NF was. All I knew was that I was scared, angry and felt helpless. I wanted to “fix” what was wrong and had no idea what we were facing. Read the Rest…
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
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…
Big NF news out of Washington, D.C. today!
Thanks to your dedicated and passionate outreach – your letters and emails, your calls and visits, as well as the collaborative efforts of a number of NF organizations – we are pleased to announce that $15 million in federal NF research funding to the Congressionally Directed Medical Read the Rest…
NF organizations together for advocacy planning.
We had a great crowd at the Congressional briefing.
Tracy Wirtanen introducing the panel.
Some great Washington DC inspiration!
Thursday and Friday, December 3rd and 4th, were just amazing days for me, NF Midwest and the entire NF Community. We made great strides in advancing Read the Rest…
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…
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…
Neurofibromatosis (NF) Midwest is proud to announce the first recipients of their new academic scholarship for adults with neurofibromatosis!
Austin Denny, 20, from North Fond Du Lac, Wisconsin and Evan Carr, 17, from Marion, Illinois are both receiving $1000 scholarships for tuition and/or books.
Established this year, the NF Midwest Scholarship Read the Rest…
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…