Texas NF provides a Clinic Liaison at Children's Health Dallas, UTSW Medical Center and Cook Children's Hospital at no cost to the medical facilities and patients. Because the initial diagnosis or advancement of the disorder often leads to many questions and concerns, the Liaison is available to give patients and families additional time to offer more information, comfort and recommendations to community resources & social services. The Liaison allows the physicians to keep on schedule and maximize his/her services; providing the patients with the extra attention needed.
We also collaborate with each of the hospitals and provide quarterly support group meetings for patients. Patients develop supportive relationships, discuss relevant issues and build self-confidence.
The annual Family camp provides a safe haven for those living with NF where their disfigurement or physical challenges are understood and accepted. It provides an opportunity to build self-esteem and establish social connections. The ultimate goal is to provide a retreat from the daily challenges and restrictions of NF and to strengthen self-confidence and build independence.
We're asking for your support to help us continue our work serving NF patients and families who rely on our services and providing resources for our staff and volunteers to continue serving the mission of The Texas Neurofibromatosis Foundation.
To understand our mission, it's important to start with a definition of Neurofibromatosis (NF). Although not well known, NF results in one out of 3,000 births. NF causes uncontrolled growth of tumors along the nerves and can lead to blindness, deafness, severe disfigurement, brain tumors, cancer and death. Our mission is to meet the needs of people impacted by NF by providing comfort, support, education, advocacy and funding of research for a treatment, prevention or cure.
Organization name
Texas Neurofibromatosis Foundation
Causes
Medical/Scientific Research
Operating Budget
$500,000 - $999,999
Counties Served
Hunt, Wise, Tarrant, Somervell, Rockwall, Parker, Palo Pinto, Navarro, Montague, Kaufman, Johnson, Hood, Grayson, Fannin, Erath, Ellis, Denton, Dallas, Cooke, Collin
BIPOC Leadership
Neither/None
Address
511 East John Carpenter Freeway