Statements

Mission

Our mission is to create a community for patients and families with NF through support, education, and advocacy.
2022 initiatives include the following:
* Continue our Laptop Giveaway Program. We plan to give a new laptop to five NF patients this year (cost is $5,000).
* Provide scholarships for youth to attend NF Summer Camps (cost is approximately $3,000).
* Collaborate with artist Rachel Mindrup to exhibit work as part of the Vanderbilt Curb Center's The Art of Healing Exhibition (cost is estimated at $1,000 for workshops, portraits, and portrait subject and family reception).
* Print and distribute a Teacher Resource Guide (estimated cost is $1,300 for printing the Guide in June 2022).
* Pay for two individuals to attend the CTF-sponsored NF SUMMIT in Chicago, July 2022 (cost is approximately $1500).
* NF Tennessee picnic and walk in September 2022, with giveaways for attendees including a commissioned portrait and gift certificates for groceries, gas, clothing and household items (approximate cost is $700).
* Help communities throughout Tennessee develop their own NF support groups (cost for food, supplies, travel and incidentals estimated at $500).
*Continued efforts include newsletters; updates on new and ongoing clinical trials for patients with NF; updated resource pages on our website that provide information on jobs and education, primarily for persons with disabilities; resources for physicians and educators of people with NF; half-day symposia sponsored by the Vanderbilt Ingram Cancer Center and the Children's Tumor Foundation, reaching a statewide, national, and international audience; continued legislative efforts meeting with staff from each Tennessee representative and senator to encourage support for continued Dept of Defense funding for NF research; expansion of Telehealth services and other efforts to improve patient access and care as part of initiatives by the National Organization for Rare Disorders (NORD).
Thank you for your help!

Background

NF Tennessee , Inc. is a nonprofit organization, begun in 2017, whose mission is to create a community for patients and families with NF through support, education, and advocacy. We have six Board members and a current budget of $43,000. NF Tennessee, Inc., 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 three 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 Dept of Defense 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 pandemic as part of initiatives by the National Organization for Rare Disorders (NORD). Current initiatives include an annual Laptop Giveaway Program, NF Summer Camp Scholarships, publication of a Teacher Resources Guide, and an art exhibition (The Many Faces of NF/The Art of Healing) in conjunction with the Curb Center at Vanderbilt. 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.

Impact

Our 2021/2022 initiatives include the following:

1. Continue our Laptop Giveaway Program.
2. Provide scholarships 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 Exhibition.
4. Print and distribute a Teacher Resource Guide.

We are the grateful recipients of two generous local grants from Gannett 's USA TODAY Network's A Community Thrives/Mighty Causes initiative. These grants, along with the generous donations of NF Tennessee, Inc., supporters, have allowed our Laptop Giveaway Program to expand, and have also allowed us to create new initiatives to support, educate, and advocate for persons with NF and their families.

Needs

We need to continue our fundraising efforts in order to fulfill our current initiatives of:

The NF Tennessee Laptop Giveaway Program (estimated 2022 cost is $5,000 for new laptops for five recipients).

Scholarships for youth to attend NF Summer Camps (estimated 2022 cost is $3,000; the number of youth we will be able to serve depends upon the particular camp they choose as well as whether they choose to attend the camp in-person or virtually).

Our collaboration with artist Rachel Mindrup's The Many Faces of NF portraits and workshops in conjunction with the Vanderbilt Curb Center's The Art of Healing Exhibition (estimated 2022 cost is $1,000 for workshops and portrait subject reception).

The printing and distribution of our Teacher Resource Guide (2022 cost is estimated at $1,000).

Service Categories
Primary Category:	Diseases, Disorders & Medical Disciplines  - Neurology & Neuroscience
Secondary Category:	-
Tertiary Category:	-

Areas Served

We serve NF patients and families from Middle Tennessee as well as all of Tennessee and surrounding states. The majority of patients are from Middle Tennessee.

TN - Davidson