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…
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…
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…
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…
Madelynn, happy despite her disabilities.
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 Read the Rest…
Smiles for Sarah
The annual Smiles for Sarah benfit walk for neurofibromatosis is on October 21st in Oak Forest, IL. This is the last year for this format, so if you haven’t registered yet, do it now! The day promises fun, friendship and hope for Sarah and SO many like her. Register Read the Rest…
This weekend we have 7 caring and energetic people running for neurofibromatosis and the NF Network organizations of NF Midwest and NF Northeast in the Chicago Marathon.
There are two ways you can support their efforts.
1. Come on out and cheer them on. They will be wearing bright green singlets. Also, some supporters will be attempting Read the Rest…
School has started and we have a new be iNFormed article that might help your child with neurofibromatosis type 1 who is attending school. This one 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 Midwest & Neurofibromatosis Northeast Unite to Fund NF Research
Neurofibromatosis Northeast and Neurofibromatosis Midwest are pleased to announce that they are funding Dr. Fawn Leigh of Harvard Medical School and Massachusetts General Hospital to support an integral component of her research, “Genetic Modifiers of Tumor Burden: Exome sequencing of those subjects with Read the Rest…
A new edition (3rd) of the booklet Understanding Neurofibromatosis is now available online for free or by mail for $5.00. It is also available for FREE to families or individuals who are new to us and reside in Illinois, Wisconsin, Indiana, Kentucky, Iowa or the east half of Missouri. If you are not in these areas, your Read the Rest…
