Fall/Winter 2012 Newsletter is now available online. You’ll find lots of iNFormation on neurofibromatosis and the happenings at Neurofibromatosis Midwest. Plus there are links to extra photos, articles and other content! If you aren’t already on our email list and would like to receive notice of our next newsletter as well as other updates, Read the Rest…
On February 4th and 5th, 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 Research Program (CDMRP). For more Read the Rest…
Dear Friend of NF Midwest,
Today I had the chance to get together with a friend that I haven’t seen in quite some time, and we managed to talk for three hours about our boys, ages 9 and 12, both with NF1. On my way home, I thought about how blessed Read the Rest…
It’s predicted that as many as 90% of people will do some online shopping this year and that a lot of people will avoid the Black Friday madness and fire up the computer instead. If you’re one of them you have the opportunity to easily raise money for the neurofibromatosis cause by starting your shopping through Read the Rest…
Watch a recording of the neurofibromatosis 2 webinar about Auditory Brain Implant (ABI) and Cochlear Implant (CI) advancements. Held on November 7, 2012, this webinar was presented and recorded by the NF Network with Dr. William H. Slattery who heads the Department of Clinical Studies at the House Ear Institute in California.
Check out other Read the Rest…
The Lake Zurich (IL) High School newspaper, Bear Facts recently did a feature story on neurofibromatosis. The author, Lexi Miranda did a great job of telling the story of what the Boyas family has been through since finding out that their 5 year old daughter, Madelynn has NF. This story gives the students at LZHS a peek into what NF is, through the Read the Rest…
It’s much better to be there, but If you missed our annual symposium in October the transcripts of a few of the presentations will be made available.
The first to be made available is a presentation from the Neurofibromatosis-2 breakout called Ocular Manifestations of Neurofibromatosis: Relief for Dry Eyes which was given by Dr. Louise A. Read the Rest…
Any one who has good health and the prospect of future that looks to be free of pain and difficulties should be very thankful this season. If you count yourself among the lucky, remember that life can be short and you should make it count.
One way you can do that Read the Rest…
The Neurofibromatosis Network, NF Midwest’s national affiliate, has just unveiled their new science column called The Network Edge which will provide a summary of recent highlights from NF research and clinical trials. The NF Network, through advocacy on Capitol Hill and direct funding of research, plays a central role in progress toward a cure.
Every Read the Rest…
Thanks to Dr. Cynthia Hingtgen, formerly of the Indianapolis University NF Clinic, for another be iNFormed article. This one is about possible vascular issues in neurofibromatosis type 1. This article may be a little scary. It is important to realize that most of these complications are very rare and that research is Read the Rest…
