WHAT IS NEUROFIBROMATOSIS?
Neurofibromatosis (NF) is the most common neurological disorder caused by a single gene, and it affects one out of every 3,000 people worldwide. NF is more prevalent than Cystic Fibrosis and Muscular Dystrophy combined. Currently there is no prevention, long-term treatments, or cure for NF.
Neurofibromatosis involves the uncontrolled growth of tumors along the nerves anywhere in the body, internal and external, and at any time throughout an individual's life. It is linked to learning disabilities, high blood pressure, and epilepsy, and it can affect the development of the brain, cardiovascular system, bones, and skin. NF can result in terrible disfigurement, deformity, deafness, blindness, brain tumors, cancer, and even death.
TEXAS NEUROFIBROMATOSIS FOUNDATION® MISSION
We are committed to meeting the needs of people impacted by neurofibromatosis by providing comfort, support, education, advocacy, and funding of research for a treatment, prevention, or cure. The Foundation is dependent on funds raised by special events, foundations, and individual donations to survive.
OUR OUTREACH
The Texas NF Foundation sends out information packets and brochures to patients, families, physicians, and educators to further public knowledge of NF. The Foundation distributes newsletters to update NF families on research efforts and support programs, as well as current Foundation activities. The Foundation provides referrals to physicians and clinics around the state of Texas that specialize in the care of NF patients. The Foundation participates in many of the clinics by visiting in person, taking the opportunity to meet new NF families and education them on the services the Foundation provides.
The Texas NF Foundation also refers patients to social and community associations that can help with specific symptoms of the disease. The Foundation organizes patient support gatherings across the state, such as the Neurofibromatosis Symposium and the NF Family Camp. The Foundation administers various and specific financial assistance funds for NF patients, such as the John D. Wagner and Elisabeth R. Wagner college scholarship fund for anyone wishing to seek higher education, and the Peter Lowry travel assistance fund for medical visits.
