NF Tennessee Inc

                    

The mission of NF Tennessee is to create a community for persons with NF and their families, through support, education, and advocacy. NF Tennessee is a non-profit organization, founded in 2018, by Dr. Paul Moots, former Professor of Neurology and Chief of Neurology-Oncology at Vanderbilt University Medical Center. Dr. Moots trained at the University of Virginia and Sloan Kettering Cancer Center, and over the course of his 45-year career, saw many patients with NF. He began the Neurofibromatosis Clinic at Vanderbilt eleven years ago, bringing together teams from pediatrics, genetics, hematology, radiology, neurology and neurosurgery to care for these patients. He began NF Tennessee to assist NF patients with the many disabilities and obstacles they face, and our programs work to help them overcome marginalization, to streamline medical care, and to more fully integrate into their communities. Our efforts have positively affected not only the patients themselves but also those they reach in their community through work, education, and outreach. 

We provide support through newsletters, our website (NFTennessee.org) and Facebook page (NFTenn), a Laptop Grant Program begun in 2020, an Arts and Music Grant Program begun in 2023, presentations, walks, picnics, and other outings, such as the art exhibit and drawing instruction conducted by artist Rachel Mindrup (Many Faces of NF), and the funding of a graduate student's national thesis questionnaire studying generational implications of families with NF, and the creation of an infrastructure in which NF patients can join and create community.  

Education efforts include updates on new and ongoing clinical trials for patients with NF, Resource Pages on our website that provide information on jobs and education, primarily for people with disabilities.  We provide resources for physicians and the educators of young people with NF, such as our Teacher Resource Guide published in 2021.  We have participated in seven annual half-day symposia sponsored by Vanderbilt Ingram Cancer Center (VICC) and the Children's Tumor Foundation (CTF), reaching a statewide, national, and international audience.  

Advocacy efforts include annual trips by a board member to the halls of Congress in Washington DC as part of the Neurofibromatosis Network advocacy initiative.  These trips involve meeting with staff from each of the representatives' and senators' offices to encourage support for continued Department of Defense and NIH funding for NF research.  These efforts successfully continued through the pandemic via virtual meetings and letter-writing campaigns.  NF Tennessee has also promoted efforts in Tennessee to continue and expand Telehealth services and other efforts to improve patient access to healthcare during the Covid 19 pandemic and beyond, as part of initiatives by the National Organization for Rare Disorders (NORD). 

NF includes a group of genetic disorders, affecting approximately 1 in 3000 people, of all ethnicities equally.  Approximately 2500 individuals in Tennessee are affected by NF.  Each child born to a parent with NF has a 50% chance of inheriting the disorder.  Some NF patients have no family history but are affected due to spontaneous NF gene mutations. The major features of NF type 1, the most common form of NF, are birthmarks, tumors on nerves (neurofibromas) that can be painful or disfiguring, a tendency for other tumors and cancers, bone growth problems like scoliosis, learning disabilities, high blood pressure and many less common problems. In addition to health issues, NF often has a major impact on educational and work opportunities, family life, and overall quality of life for people with NF.

Our top 2026 initiatives include the following:

1.  Begin a Scholarships for Higher Education Program for college, community college, trade and technical schools.

2.  Begin a Life Skills Development Program, incorporating one-on-one coaching and supervised group on-the-job work experience through partnerships with other non-profits.

3.  Begin an Emergency Funds Program, for costs such as transportation to and from medical appointments.

4.  Continue our Laptop and Individual Grants Programs, which we expanded to include opportunities to receive art supplies, cameras, and musical instruments, and enhanced NF research funding. 

5.  Expand our outreach to NF patients throughout the state by increasing virtual meetings and educational events, and support Community Action Projects such as walks, picnics, and other social events, and publicize and support fundraising efforts for other local and national NF organizations whose efforts benefit the NF community in Tennessee. 

Please join us and support the efforts of NF Tennessee to build a stronger community.  Thank you so much!