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!