Blog Post #2

Dear Friends of NF Tennessee,

We hope you are having a great Summer. Fall 2018 – Spring 2019 has been an exciting time for the local NF community and for NF Tennessee, and it’s about time for an update. Events of special interest to the NF community included:

- Nashville NF Walk benefiting CTF in September

- Memphis #nfstrong 5k Walk/Run benefiting the NF Network in November

- Cupid’s Undie Run in Nashville and Knoxville benefiting the Children’s Tumor Foundation

- Nashville St. Jude Rock ‘n’ Roll Marathon with Team Nico raising funds for CTF

- NF Patient and Family Symposium at Vanderbilt cosponsored by the Vanderbilt-Ingram Cancer and CTF

- Night of Hope Concert at Franklin Theater benefiting CTF, starring Thompson Square

These events raise awareness, raise funds, and build a community that is active in its support of persons and families affected by Neurofibromatosis. And there is much more coming up in the next 6-8 months. Take a look at our website calendar for Fall 2019/Spring 2020.

NF Tennessee has also made important strides in trying to become a valuable local resource to the NF community of Tennessee and the surrounding region. Our biggest project is building a Resource Page for the NF Tennessee website that highlights resources that are here in Tennessee for the NF community. There you will also find links to the important national organizations that support awareness and education about NF, like the Children’s Tumor Foundation and the Neurofibromatosis Network. The information they provide on NF is excellent. There is no way for us to top what they have done. So rather than duplicate it, our goal is to build a list of resources based in Tennessee and this region. And what we are learning in the process is that the more you look the more resources there are. We have had input from people in the local NF community and are aiming to get more. We have enlisted experts on resources for people with disabilities, especially our colleagues at the Vanderbilt University Kennedy Center. With their help we hope to provide a resource list for the Tennessee NF community containing local Tennessee and regional resources for support, education, and advocacy. It is a work in progress, so let us know if there are particular areas of need or particularly useful resources that you know of.

One way to get the word out and get new ideas in is to have an event highlighting the development of the NF Tennessee Resource Page. A fun way to bring this community together is to have a picnic, and plans are underway for a picnic at Edwin Warner Park on Saturday, September 14 from 11:30 until 2:30. We hope you can join us. Attendance is free but please register at:

https://www.eventbrite.com/e/nf-tennessee-picnic-registration-67039556117

And if you like to bake pies, bring your best for the pie contest!

Our best to you and yours……

Paul Moots for NF Tennessee

NF Tennessee is a 501(c)3 nonprofit organization whose mission is to provide support, education, and advocacy for individuals and families of the NF community in Tennessee and the surrounding region.