Blog Post 15 April 28, 2024
April 28, 2024
Dear Friends of NF Tennessee,
Here comes May – NF Awareness Month – year after year this keeps growing with local, national, and international activities.
For NF Tennessee this is the month for the annual Laptop Giveaway Program, our banner giveback program. And we are teaming that up with our Individual Grants Programs for individuals with NF who have special plans for developing talents in art, music, or any creative activity, and for supporting higher education. Summer camp scholarships for NF camps is another great option. So think creatively … we are eager to help you see what you can accomplish, and as always, we would love to put whatever it is up on our website!
Laptop Giveaway / Individual Grant Application Forms:
If you are planning a special NF Awareness Month activity, please let us know at contact@nftennessee.org. We would love to publicize and also would love to post your pictures.
Advocacy for NF in the Springtime means encouraging support for NF research. The federal budget is being worked out in Washington and $25 million dollars is being earmarked for NF research through the Department of Defense medical research program, and additional funding is being considered in the NIH. Mr. Ted Goodman, our board member, joined the contingent of 100 people in Washington fort eh NF Network’s Capital Hill Advocacy Program in February to meet with the Tennessee Senators and Representatives. So far only one Tennessee representative has signed the letter of support. Keep watching this and contact your senators and representative to voice your support.
NF Tennessee made its first entry into research support for NF last year with the research initiative by Ms. Mikaela Bradley, a graduate student in Genetics Counseling at Vanderbilt. Her project is nearing completion and she has done a fantastic job! We are looking forward to hearing the details of that soon, as she will be the focus of our soon to be published NF Tennessee Newsletter. We are looking forward to more opportunities to foster NF research in Tennessee, and also to reestablishing the print version of our newsletter.
We are putting the finishing touches on our first NF Tennessee Survey hoping to learn from the people and families with NF what suggestions you all have for us. That should be ready for distribution soon via email, mail and on our website. We will also distribute it at the Annual NF Tennessee Picnic!
That’s right … the Annual NF Tennessee Picnic will take place at Sevier Park in Nashville on Saturday June 22, 2024 from 11:30 AM to 3:00 PM. Join your NF friends and families for great BBQ, crafts, games, the annual homemade dessert contest (!!!), and guaranteed great weather according to Skyler! We have got more room this year so the more the merrier!
And mainly for a little fun consider these two new NF Tennessee activities: 1. Team NF Tennessee – always willing to run a race (usually 5K) or do a walk, Team NF Tennessee currently has three members, Skyler, my sister Christine, and me. Skyler and I recently ran the Gilda’s Club 5k at Shelby Park. There are so many great charities that have a connection we can support! We would love to have a virtual team stretching from Memphis to Carolina! If you are interested just let me know. We are already “training” for the finale of this year’s running season, the Memphis NF-Strong 5K on November 10, 2024 (for details visit 2024 #NFStrong 5K - Memphis - Neurofibromatosis Network (nfnetwork.org) ). This event keeps getting bigger and should be huge this year. And … 2. Visit our new NF Tennessee Recipe Hall of Fame. Mary’s Famous Granola (another sister) fueled Christine and my virtual (from Junaluska, NC) effort in the Nashville NF Walk last September. If you have a great recipe that fuels your NF efforts please send it in, plus a picture!
Do a good NF deed for NF Awareness Month!
Paul Moots, for NF Tennessee