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Neurofibromatosis Midwest


Archive for the “NF News” Category


Sign Up for the Neurofibromatosis Registry

NF Midwest has partnered with CTF to promote the NF Registry.

The NF Registry is a database where anyone who has Neurofibromatosis (NF) Type 1, Neurofibromatosis Type 2, or schwannomatosis can register their contact information and include how NF or schwannomatosis affects them. This information will then be used to determine who may be Read the Rest…


Positive Exposure for Neurofibromatosis

NF Midwest is very excited to have Rick Guidotti of Positive Exposure speaking at our symposium Saturday, October 24th.

Rick is an award winning fashion photographer who uses photography and video to transform public perceptions of people living with genetic, physical and behavioral differences.

Seven years ago we were very fortunate to have Rick speak at our symposium and to take beautiful photos Read the Rest…


Awareness Color for Neurofibromatosis

At NF Midwest we are frequently asked what the “awareness color” is for neurofibromatosis for use in ribbons, etc. So we’re going to attempt to set the record straight!

First, understand there is no all-powerful, divine being that bestows awareness colors. Also, as far as we know there has never been any sort of agreement Read the Rest…

Press the Button to ACT NOW!

Voice Your Support for Neurofibromatosis Research

Press the Button to ACT NOW!

The House of Representatives is in budget negotiations and we need people to contact their Congressman NOW and ask them to include $15 million for the Peer-Reviewed Neurofibromatosis Research Program (NFRP)

Please call or email your Congressman directly…or if you don’t have time for that, the NF Network has set-up Read the Rest…

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Consider One Final Gift

Our fiscal year is coming to an end on September 30.

Your generosity in our fiscal year 2015 dictates what programs we are able to fund in 2016 budget which we are planning now.


Please consider one final gift for FY2015, or better yet,


by setting up a small automatic monthly giving donation.


You can donate Read the Rest…


25th Symposium and (new) iNFo Fair

Our 25th Annual Neurofibromatosis Symposium is scheduled for Saturday, October 24th and new this year, it will include an iNFo Fair!

The NF Symposium and iNFo Fair will feature short presentations on various subjects designed to inform and

help improve the lives of those with neurofibromatosis.  There will also be tables with extra information manned by Read the Rest…

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Telling Your Child About Their Neurofibromatosis

We frequently get asked about how to tell a child they have neurofibromatosis…or whether to tell them at all. Obviously, this is a difficult decision and an important discussion. While we recommend telling and including a child in a way that is appropriate for their age, ultimately it is up to the parents.

Consider though Read the Rest…