This is a great, small Texas non-profit that serves patients and families struggling with Neurofibromatosis or NF. NF, a disease for which there no cure and only limited treatment, can have multiple manifestations ranging from unsightly, benign tumors, to bony abnormalities causing limb loss. The disease can also cause cancer, resulting in loss of life. It is imperative that patients receive information and informed medical care, on a lifelong basis. The foundation offers care and support for patients, detailed information about the disease in the form of written materials, free lectures and symposia. It also provides counsel and information leading to knowledgeable health care professionals who have expertise in the disease. The foundation organizes support groups around the state, and also sponsors an annual family camp at Camp for All in Burton, Texas. Whenever possible, the foundation funds research towards treatment and a cure for NF. Our daughter has NF, and amputated a leg as a result. The foundation has been there for us over the years, helping in all sorts of ways.The foundation operates on a shoe-string budget, but these people really care about patients and their families!
Review from Guidestar