Welcome to neurofibromatosis tennessee

January 20, 2025

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Dear Friends of NF Tennessee,

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Wow ... is it cold out ... 18 degrees and heading down!!! But the 2025 NF Tennessee Calendar is just heating up ... ... of course ...

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Rolling Out the NF Tennessee 2025 Calendar:

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This year some new virtual events will be rolling out nationally and locally here. Creative Therapy and NF1 will kick off a new NF Netwprk series.  We will keep updating the NF Tennessee Calendar as new events show up. 

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February gets into serious advocacy.  NF Tn board member Ted Goodman will once again participate in the NF Network Advocacy Program on Capital Hill encouraging federal support for NF research.  The current level of support is 25 Million dollars each year! That is a lot. It takes a lot of effort by these advocates, who meet with each of the Representatives and Senators including all 11 from Tennessee, goes into enduring continued support. Over the next 4 months we follow up on that effort by encouraging you to contact your Senator and Represetative to support inlcuding NF research in the federal budget.  

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NF Tennessee Community Engagement Survey – Help turn today's little snowball into a giant snowperson 

 

So far we have twenty responses and they really are informative. Topics that received the highest rating (1) on a 1 to 5 scale inlcude: 1.  Interest in NF research in Tennessee (90%), 2.  Awareness about NF by state and national representative (85%), 3.  Like following NF-related posts on social media (80%), and 4. Value more NF awareness in the wider community here (work, school, neighborhood) (80%). 

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We aim to keep building NF Tennessee programs with insights from our Community Engagement Survey, so please take a few minutes (5 - 10 is all it takes) and let us know what is important to you, and what your good ideas are. Next steps include presenting the survery at a webinar and forming an advisory committee, the NF Tennessee Community Engagement Committee to help put your ideas into action.

 

The survey can be filled out and submitted online, or printed to fill out and mail to us at: NF Tennessee, P.O. Box 150661, Nashville, Tennessee 37215-9998.​

 

So please take 10 minutes and give us your best ideas by fillling out the NF Tennessee Community Engagement Survey here: 

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https://forms.gle/2YBaLnx4UiDjwWKs7

 

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Best Wishes for the New Year!!!

Paul Moots, for NF Tennessee