NF TN Higher Education/Life Skills/Emergency Funds

NF Tennessee, founded in 2018 with a mission to create a community for persons with NF and their families through support, education and advocacy, has three NEW initiatives for 2026: 

1.  Scholarships for Higher Education:

These will include scholarship funds for college, community college, trade, and technical schools.

2.  Scholarships for Life Skills Development Programs:

These programs incorporate one-on-one coaching, as well as supervised group on-the-job work experience.

3.  Emergency Fund for Patients with NF, for costs such as transportation to and from medical appointments.

Continuing Programs:

We will continue our Laptop Grant/Individual Grant Programs, including Music, Camera and Art Supplies, and Research Efforts.

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 Grant Program, NF Tennessee was able to give new laptops to 3 persons with NF. This number has increased to a high of ten laptops provided in a year to recipients.  

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 2023, we expanded our Individual Grants Program to include opportunities to receive art supplies, cameras, and musical instruments in addition to laptops. We also supported further NF Research such as our recent funding towards a graduate student's national thesis questionnaire studying the generational implications of persons with NF, which is now a published study.

We will support Community Action Programs, and continue to 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, fundraisers for research, 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, such as our published Teachers Resource Guide. We have participated in seven half-day symposia sponsored by Vanderbilt Ingram Cancer Center and the Children's Tumor Foundation, reaching a statewide, national, and international audience.  

Advocacy Efforts include trips by board members to the halls of Congress in Washington DC as part of the Neurofibromatosis Network advocacy initiative. These 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. During the pandemic, these efforts and appeals continued virtually. NF Tennessee 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 for patients and families. Thank you.