• NF is equally common in males and females in every racial and ethnic group.
• An estimated 8,000 people in Texas have NF.
• 50% of the patients inherit the disease from a parent and 50% have NO FAMILY history of NF.  Their disease is the result of a spontaneous gene mutation.
• For individuals who have NF, there is a 50% chance that their child will be born with NF.
• NF is a highly variable, yet progressive disease that affects each person differently.
• Some patients experience severe complications causing chronic pain.  Others become deaf, blind, or disfigured by large tumors.
• NF is linked to learning disabilities (65% of patients), high blood pressure, epilepsy, and some forms of cancer.

THE TEXAS NEUROFIBROMATOSIS FOUNDATION (TNFF) was founded in 1981.  The foundation was headquartered in Austin until 1987, when the main office was moved to Dallas.

OUR VISION  We are committed to meeting the needs of people challenged with neurofibromatosis by providing care, comfort, support, information, education, funding and other resources for its treatment, prevention and cure.

PATIENT OUTREACH PROGRAMS AND SERVICES

Since NF is so common, there is a constant need for support, information, and education.  The foundation organizes support/information gatherings across the state such as meetings, social outings, the annual NF Family Camp, and the annual NF Symposium.  We also send out information packets with brochures to patients, physicians, teachers, and families as part of our public education program.

The foundation provides referrals to doctors and clinics for individuals diagnosed with NF.  There are several clinics and private doctors in Texas that treat NF patients including Children's Medical Center in Dallas, Baylor College of Medicine/Texas Children's Hospital, Cooks Children's Medical Center, Ft. Worth & M.D. Anderson Cancer Center in Houston, Methodist Children's Hospital in San Antonio.

The Peter Lowry Family Assistance Fund enables the foundation to provide families with financial assistance for a portion of their transportation and accommodation expenses when they must travel to a clinic or hospital for treatment.  The John D. Wagner and Elisabeth R. Wagner Scholarship is a scholarship awarded each school year for people afflicted with neurofibromatosis who seeking higher education.

RESEARCH

Since 1981, we have funded key research and clinical applications to find a cure for NF.  These grants have allowed top scientists from fine institutions such as Southwestern Medical, Cold Springs Harbor Laboratory and University of Texas MD Anderson Cancer Center to make extraordinary progress in the search for a cure.