Blog Post #9
July 8, 2022
Dear Friends of NF Tennessee,
There has been a lot going on in the world of NF and a lot coming up too!!! Here is an update of recent events:
U.S. House of Representatives Appropriations Committee approved $25 million dollars in research funding for the Neurofibromatosis Research Program (NFRP) in their Fiscal Year 2023 Defense spending bill! This is based on strong ground level support from the NF community and advocacy from groups like The NF Network.
Vanderbilt University Medical Center opens a new NF2 Clinic and hosts its first NF2 Patient and Family Symposium that was attended by more than 40 individuals.
NF Tennessee has been very active this Spring. We have:
Given away 3 Apple laptop computers in the third year of the laptop Giveaway program.
Raised over $7800 in the BigPayback fund raising drive.
Published the NF1: A Resource for Teachers.
Held our first Virtual Community Event as a Zoom meeting on April 21, 2022.
Upcoming Events:
July 21-24, 2022 is the Children’s Tumor Foundation Patient Summit. NF Summit | Children's Tumor Foundation (ctf.org). If you are going or are interested in going, please contact us.
Friday, August 19, 2022 from 3:30 – 5:00 pm CST is the Art Workshop for NF Patients with Rachel Mindrup hosted by the Curb Center at Vanderbilt University and NF Tennessee. A reception for the entire NF community will follow from 5:00 to 7:00 pm CST. These events are part of the Curb Center’s Art of Healing Program (Creative Placemaking Projects | Art of Healing Exposition | United States) These events are free. Here is the link for more details and to register:
https://www.eventbrite.com/e/painting-your-journey-tickets-387766830027
Saturday, August 20, 2022 from 8:30 - 11:30 am CST is the 5th Annual Patient and Family Symposium (virtual) hosted by Vanderbilt-Ingram Cancer Center and Children’s Tumor Foundation. There is a great lineup of speakers including Dr. Bruce Korf, Dr. Vicki Keedy, Dr. Jennifer Brault, Ms. Rachel Mindrup, Mr. Skyler Moots, and Dr. Paul Moots. Here is the link for more details and to register:
Saturday, September 10, 2022 from 11:30 - 3:00 pm CST is the NF Tennessee Annual NF Community Picnic. This year we will be in-person at Sevier Park in Nashville, TN. This event is free. Here is the link for more details and to register:
https://NFTennesseePicnic.eventbrite.com
Sunday, October 2, 2022 is the NF Tennessee Group Outing to watch the Nashville Soccer Club play the Houston Dynamo at Geodis Park. The game starts at 7:30 pm CST, and we will meet up beforehand at Gate C from 6:30 - 7:15pm CST. Tickets are provided by NF Tennessee. Here is the link for more details and to register:
https://NFTennesseeSoccerGame.eventbrite.com
Please check out the NF1: A Resource for Teachers. If you would like to have a printed copy just email us and be sure to include your mailing address.
Thanks for your interest and support, Paul Moots, for NF Tennessee