Welcome to neurofibromatosis tennessee

February 29, 2024

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Dear Friend of NF Tennessee,

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          Happy Leap Day … We hope your year is off to a great start!

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         Our Mission is to provide support, education, and advocacy for the people affected by NF in and around Tennessee.  We hope that providing information on what’s happening, supporting special projects and programs, and hosting or supporting NF community events contributes to building a vibrant NF community here.

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          Last year was an exciting one with lots of events including a very fun Annual Picnic, our biggest ever Laptop Giveaway with some great applicants, and establishing a connection with the Neurofibromatosis Network as a Member Organization. And we branched out a little further with support for NF research in Tennessee.

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          Near the end of 2023 we did some brainstorming about aims for 2024 and a lot of ideas came up, but top of the list is to get more information from you all about what we can do to be helpful to the people and to the community of people dealing with NF in this area. So, to learn more we are kicking off with a survey to try to get your feedback and ideas. The Friends of NF Tennessee Survey will be a short questionnaire with some space for open comments and suggestions.  If you are willing to take 10 to 15 minutes to give us your input and suggestions, you will receive a $10 gift card. An even bigger reward is helping you NF friends.  So, keep your eyes open the surveys will be going out soon.

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          The NF Tennessee Laptop Giveaway Program is taking applications from March 1 through May 10 with the awardees to be announced on World NF Awareness Day, May 17. Once again there are also grant opportunities for other individual creative activities.  Visual art, music, writing … or any special personal projects you want to do to enrich your life and those around you we would love to support.  Your art would also be something great to share with the NF community on the NF Tennessee website! Summer camp scholarships are another way we would love to support individuals in the NF community. 

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Laptop Giveaway / Individual Grant Application Forms: 

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https://forms.gle/xCM9dsiGUzeCrwh87

Applications for the laptop and individual grants are also on the NF Tennessee website (nftennessee.org).

 

          On a personal note, in December 2023 I completed my work in the Neurofibromatosis Clinic at Vanderbilt as I move closer to retiring. My neurology career began in 1981 as a resident trainee. Some great teachers and mentors got me interested in tumors and cancers of the nervous system, which led to extra training in neuro-oncology that continued through 1989. After 2 more years (5 total) working in neuro-oncology in New York City, we came to Nashville to work in neuro-oncology at Vanderbilt in 1991. For all that time in training and the 33 years since, caring for patients with neurofibromatosis has been one of the most special elements of my career, including some of the most challenging and some of the most rewarding chapters in it.

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          In 2011, with the help of many colleagues, we started the Neurofibromatosis Clinic at Vanderbilt, and in 2017 joined the Children’s Tumor Foundation NF Clinic Network. Also in that year, and with the incredible help of family and friends we launched NF Tennessee. So, all along, NF has been an important part of my 40 year medical career, and it has been the core fuel of it for the last 12 years.

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          Getting to see the growth of knowledge about NF has been especially rewarding. The switch in our understanding of neurofibromatosis from “peripheral-” and “central-type” to the clear genetic distinction between NF1 and NF2 in the late 1980’s and early 1990’s, and the subsequent distinction of the schwannomatoses with their relation to NF2 has really changed things for all of us. More recently the development of effective antitumor treatments, the MEK inhibitors for plexiform neurofibromas, which I got to participate in clinic trials of, and the introduction of bevacizumab and brigatinib for NF2-related schwannomas were also game changers. These were not just laboratory and textbook developments, but really impacted the people we saw in clinic every week struggling with the many ways NF impacts health, and family, and life. It is true that I learned more from the people I cared for than from the textbooks, and my thanks go out to so many patients who taught me something to help the next person.

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          In this transition I am very excited about the future of the Vanderbilt NF program with Dr. Alex Mohler taking it over. I am also very excited in a more general way about the future of the people with NF and their family and friends in Tennessee. There are a lot of exciting things happening for the NF community here, in Memphis, in Nashville, Murfreesboro, Clarksville, Knoxville, Chattanooga and all in between. We hope NF Tennessee can add some fuel to what so many people are already doing for this community. I look forward to the time, rapidly approaching, when I have more friends than patients with neurofibromatosis.

 

Sincerely,

Paul Moots, for NF Tennessee

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