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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

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Update: Insurance Coverage for the Removal of Neurofibromas

If you have cutaneous neurofibromas that are causing you any distress you CAN have them removed. They are ALMOST always covered by insurance, Medicare and Medicaid if the paperwork filed by the physician is properly coded and documented.

As of October 1, the United States has transitioned from ICD-9 (International Code of Diseases) to updated ICD-10 Read the Rest…

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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

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 an easy petition site that only Read the Rest…

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Participants Needed for NF1 Study on Coping with Pain

 Coping with Pain: an ACTive Approach

 

Do you have NF1 and one or more plexiform neurofibromas?
Do you have pain that has lasted three months or more?
Are you between the ages of 16 and 34 years?

 

If you answered yes to all these questions, you may be eligible for a new study at the National Cancer Institute in Bethesda, 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,

KEEP HOPE IN MOTION

by setting up a small automatic monthly giving donation.

 

You can donate Read the Rest…

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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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be iNFormed for Teachers

School is starting! If you have a child with neurofibromatosis type 1 you might find our be iNFormed article NF1 Information for Teachers helpful.

 This article 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…