NF TN Grant Programs, Community Action, Outreach

NF Tennessee is a non-profit organization, founded in 2018. Our mission is to create a community for persons with NF and their families through support, education, and advocacy. In 2023, NF Tennessee became a Member Organization of The NF Network.

Our top three goals for 2024-2025 are:

1.  Continue our Laptop Giveaway/Individual Grant Programs, including Music, Camera and Art Supplies, Summer Camp Programs, Aid in College Costs, Attendance at National NF Meetings, and Research Efforts.

2.  Support Community Action Programs.

3.  Expand our Outreach to NF patients throughout the state.

Laptop Giveaway and Individual Grant Programs: Providing laptops to those who cannot afford them and who may be otherwise marginalized due to disability opens up a world of possibilities for integration into their communities. In 2020, our inaugural year of the Laptop Giveaway Program, NF Tennessee was able to give new laptops to 3 persons with NF. In 2021, we provided 4 new laptops, and in 2022 we gave an additional 4 laptops to persons with NF. In 2023, we doubled our numbers, and awarded 8 new laptops to our applicants. And in 2024, we were pleased to award 9 new laptops. 

Recipients are chosen based on how they will use the laptops to positively affect their communities. The ripple effect to the community reaches far beyond the individual recipients. Their integration into their communities positively affect not only themselves and the NF community, but also those they reach through their work, education, and outreach, such as children and adults with disabilities. Laptops also provide a stronger connection to medical care professionals through the expanding use of Telehealth.

In 2024, we expanded our Individual Grants Program to include opportunities to receive art supplies, cameras, and musical instruments in addition to laptops; attendance at national NF meetings; summer camps; college costs; and NF research (such as our recent funding towards a graduate student's national thesis questionnaire studying the generational implications of families with NF).

Community Action Projects: This year, we will support Community Action Programs such as walks, picnics, and other social events, and publicize and support fundraising efforts for other local and national organizations whose efforts benefit the NF community in East, West, and Middle Tennessee. 

Outreach: We will expand our Outreach to NF patients throughout the state by increasing the number of virtual meetings and educational events, and by identifying and sharing local resources to help individuals with NF overcome the obstacles they face in daily life (work, school, family life) as a result of NF.    

In addition, NF Tennessee provides support through our website (NFTennessee.org) and Facebook page (NFTenn), newsletters, walks, picnics, and 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, and the creation of 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. We have participated in six half-day symposia sponsored by Vanderbilt Ingram Cancer Center and the Children's Tumor Foundation, reaching a statewide, national, and international audience.  Advocacy occurred with a trip by board members to the halls of Congress in Washington DC as part of the Neurofibromatosis Network advocacy initiative. This involved 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. During the pandemic, these efforts and appeals continued virtually. NF Tennessee has also promoted efforts to expand Telehealth services and other efforts to improve patient access to healthcare during the Covid 19 pandemic 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 people 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.

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