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Blog Post #11

February 5, 2023

Dear Friends of NF Tennessee,

We hope you all are doing good! January flew by and February is here with some very promising events for the NF community.

The Neurofibromatosis Network will have their annual NF Advocacy Program in Washington DC February 5-9 with representatives from each state meeting with their congressional lawmakers to urge support for federal research funding for NF. Last year $25 million dollars was approved to support NF research. Mr. Ted Goodman, one of our NF Tennessee board members, will be part of the Tennessee group advocating for NF research. It is really exciting to be part of this effort … Good luck Ted!!! Keep watching for emails over the next few months with instructions on how to send your U.S. Congressional Representatives and Senators information to encourage their support for NF.

Applications for our Laptop Giveaway Program are due between February 15th and May 10th, 2023. Winners will be determined and notified on World NF Awareness Day, May 17th. Please note that we have expanded our Giveaway options this year to cater to additional artistic interests. In addition to laptops, you may now apply for musical instruments (such as guitars, keyboards, drums, etc.) and for art supplies (for example, canvases, oils, sketchpads, watercolors, brushes).

Saturday, February 18 is the annual Cupid’s Undie Run. Here is a great way to have fun while supporting NF causes. Donations from this national event go to the Children’s Tumor Foundation which helps us all, including its support for research, patient education, and patient care. CTF sponsors the NF Clinic Network of which the Vanderbilt-Ingram Cancer Center Neurofibromatosis Clinic is a member and provides funding for the annual VICC Patient and Family Symposium.​

Tuesday, February 28 at 6:00 PM Central Time will be the second NF Tennessee Virtual Community Event. This free zoom meeting is open to everyone in or near Tennessee who is interested in local resources and activities related to neurofibromatosis. We are eager to get your ideas on programs that would help the NF community, on events to add to our monthly calendar, and other information to add to our website. We are also looking to build on last year’s NF Art programs by expanding our Galleries with your art! Hope you can join and bring along your best ideas!

Many thanks for all your interest and support,

Paul Moots, for NF Tennessee



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