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Neurofibromatosis Midwest


Archive for the “Stories” Category


Neurofibromatosis Champions Speak Out!

Almost every week we have NF Champions stepping forward and raising neurofibromatosis awareness and asking for donations to NF Midwest. These are ordinary people choosing to do extraordinary things for the NF cause.

Often they raise awareness one group at a time by reaching out and speaking up. They include people like Patrick Z who regularly Read the Rest…


Two Great Stories For Neurofibromatosis

Raising awareness and funds is not only a year long, but life long battle. There are a lot of people who open their lives to share their stories about neurofibromatosis in order to do this.

Two such people have created pages on our Firstgiving site that we’d like to share now. Their stories are both Read the Rest…

Neurofibromatosis Fighter - Training2Live

Video – Our 2013 Symposium Inspirational Speaker

We are very excited to have a special speaker scheduled for 2013 NF Family Symposium coming up on Saturday, October 12th. DeJuan Evans has NF1 and is an MPNST survivor. More importantly, he is an NF Hero with muscular arms the size of large tree trunks. He not only proves that MPNST can be fought, Read the Rest…

Naperville 2013

Neurofibromatosis Inspirational Day!

Check out the photos and the wonderful video of a speech from two inspirational families.


Check out the photos by Christina Michelle

We just finished the popular neurofibromatosis walk, Great Steps 4NF, in Naperville, IL on June 1. This is a hugely attended, inspirational walk/rally for the NF cause in Read the Rest…

Madelynn, happy despite her disabilities.

Featured Story-Just the Bear Facts Ma’am

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…