NF Tennessee Inc

Mission Statement

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!


Posted on

April 6, 2023