Blog Post #1

Hello Friends of NF Tennessee and welcome to our first blog! Here at NF Tennessee we hope the newsletter and website become a familiar source for information about news and events happening locally in regard to neurofibromatosis.

 

The last nine months have been full of exciting developments for the NF community in middle Tennessee.  September 2017 saw the NF Walk on a beautiful day at Edwin Warner Park. We also saw the Vanderbilt NF Clinic selected to join the Children’s Tumor Foundation Clinic Network.  February saw Cupid’s Undie Run including an NF Tennessee table, and Rare Disease Awareness Day. April brought the first NF patient symposium in Nashville, jointly sponsored by Vanderbilt-Ingram Cancer Center and the Children’s Tumor Foundation.  This was followed soon after by a huge fundraising effort for the Children’s Tumor Foundation in the Rock and Roll Marathon powered by Team Nico. May included the CTF Family Forum in Atlanta, and then NF Awareness Day on May 17. All this gives the impression that the level of activity in the NF community here is strong and growing, which is very exciting.

 

We at NF Tennessee hope that we can contribute to that growth by providing information that will be useful to the Tennessee NF Community. One step in that direction is our goal to develop a list of resources that you can use.  There are many kinds of resources: education, medical, resources for parents, resources for teachers, resources for kids, online resources, books ….. the more you think about it the longer the list becomes. So start thinking! NF Tennessee and all your friends in the NF community want to know your favorite NF resource.  Please email your resource to us so that we can grow the best NF resource list anywhere.

 

Also, if you know of NF related events in your community that you would like to advertise please let us know and we will include it on the NF Tennessee calendar.

 

Best wishes to all and get us those resources,

 

Paul Moots, M.D.

President, NF Tennessee

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