Join the NF community and participate in a Great Steps for Neurofibromatosis walk.
The Great Steps 4NF Walks include the largest walk for NF in the country in Naperville, IL.
Bring co-workers, friends and family.
Fun and friendship is the theme!
Our loved ones with NF are the center!
Raise awareness and funds by starting Read the Rest…
Genetic Evaluation for the Scoliosis Gene(s) in Patients with Neurofibromatosis 1 and Scoliosis
Participants are needed for a study entitled: Genetic Evaluation for the Scoliosis Gene(s) in Patients with Neurofibromatosis 1 and Scoliosis. The study is being conducted by Dr. David W. Polly, Jr. of the University of Minnesota-Department of Orthopaedic Surgery and Dr. Christopher Read the Rest…
The Department of Medical Genetics at Henry Ford Hospital in Detroit, MI is conducting a study to evaluate the genetic and molecular characteristics of breast cancer in NF1 patients. We are looking to recruit men or women with NF1 who also have a history of breast cancer. Potential participants would be Read the Rest…
A neurofibromatosis type 2 researcher is looking for people who have been diagnosed with NF2 and have hearing loss to participate in a brief survey about communication.
The online survey will take approximately 10 minutes to complete. Participation in this survey is voluntary. It is not necessary to answer every question and you may discontinue Read the Rest…
Chapters are forming throughout the Midwest to DoIt4NF.
On Monday, January 28th the Evansville chapter held a fun productive meeting and made plans to pass out water and share information about neurofibromatosis at the Southern Indiana Classic Marathon. They also discussed the possibility of an NF Family Event and a fundraiser for NF.
The Central Read the Rest…
It’s brand new year and hopefully you’re keeping some of your resolutions.
We all know how that there is not enough neurofibromatosis and schwannomatosis awareness. We know that cause is underfunded and deserves much more. What difference will you make this year?
One resolution not to break is to DoIt4NF in 2013! The neurofibromatosis cause needs Read the Rest…
NF Midwest has 9 coveted spots left for the Naperville Marathon or Half Marathon. Registration opens again on March 25 at 9:00 am…but only for charity fundraising runners.
If you want to help families affected by NF while running in the Inaugural Naperville Marathon, give NF Midwest a call!
We have your ticket to this cool race Read the Rest…
Check out the newest edition of the Network Edge provided by the Neurofibromatosis Network, NF Midwest’s national affiliate. This science column provides a summary of recent highlights from NF research and clinical trials. The NF Network and their affiliates like NF Midwest, play a central role in progress toward a cure through advocacy Read the Rest…
Check out a recording of the Update on Schwannomatosis webinar that was sponsored by the Neurofibromatosis Network on Dec. 19, 2012. The presenter was Dr. Plotkin, director of the Neurofibromatosis Clinic within the department of Neurology at Massachusetts General Hospital.
Learn more about schwannomatosis.
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…
