NF TN Laptop, Camp, Art, Teacher Resource Programs
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.
We provide support through our website (NFTennessee.org) and Facebook page (NFTenn), newsletters, a Laptop Giveaway Program, walks, picnics, and creation of an infrastructure in which NF patients can join and create community. We planned to send children/young people with NF to NF camps last summer as well, but these camps were cancelled as a result of COVID-19. We will resume that program in the summer of 2022. 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 three half-day symposia sponsored by Vanderbilt Ingram Cancer Center (VICC) and the Children's Tumor Foundation (CTF), reaching a statewide, national, and most recently international audience. Another symposium is scheduled for August 28, 2021. Advocacy has occurred with a trip by two of our 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 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 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 autosomal dominant genetic disorders, affecting approximately 1 in 3000 people, of all ethnicities equally. Approximately 2000 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.
Our 2021/2022 initiatives (see Featured Campaign) include the following:
1. Continue our Laptop Giveaway Program.
2. Provide funding for youth to attend NF Summer Camps.
3. Collaborate with artist Rachel Mindrup to exhibit work as part of the Vanderbilt Curb Center's The Art of Healing initiative.
4. Print and distribute a Teacher Resource Guide.
Please join us in our Featured Campaign and support the efforts of NF Tennessee to build a stronger community. Thank you!