[Congressional Record (Bound Edition), Volume 154 (2008), Part 8] [Extensions of Remarks] [Page 11752] [From the U.S. Government Publishing Office, www.gpo.gov]MAY AS NEUROFIBROMATOSIS AWARENESS MONTH ______ HON. JOHN SULLIVAN of oklahoma in the house of representatives Thursday, June 5, 2008 Mr. SULLIVAN. Madam Speaker, I rise to state for the record, and bring to my colleague's attention, that the month of May is globally recognized as Neurofibromatosis Awareness Month. On May 13, 2008, Tami Harbour, her mother Marcia Higgins from Tulsa, Oklahoma, and Tami's 94 year-old grandmother Wilma Seely from Owasso, Oklahoma, came to my office with Tami's twin sister Teri to educate my staff and me about Neurofibromatosis (NF). NF is a genetic disorder that causes tumors to form on the nerves of the body. These tumors are not restricted to any certain portion of the body and can appear anywhere, at any time, at any age. NF type I strikes one in every 2,500--3,000 people, without regard to race, sex or age. The first signs of the condition are usually multiple cafe-au- lait colored spots on the skin. Some of the youngest victims of this condition can also be subject to optic gliomas--brain tumors that can cause blindness and can be life-threatening. In addition, bone deformities, including scoliosis at an early age, and plexiform tumors, which can cause severe medical problems and turn cancerous, can also be caused by NF. Learning disabilities occur in more than 65 percent of the individuals with NF type 1. NF type 2 is a genetically distinct form of NF that causes tumors to form on both acoustic nerves, resulting in deafness. NF type 2 also causes visual problems and muscle weakness. Symptoms of this type of neurofibromatosis include ringing in the ears, balance problems, and reduced hearing; however, these symptoms often do not appear until the late teen years, even if the condition has been present since birth. NF type 2 strikes 1 in 30,000 people and does not discriminate by age, sex or race. At this time, surgery is the only effective treatment to relieve the problems caused by the symptoms of both forms of NF. There is no pharmaceutical treatment to control the growth of tumors and, unfortunately, there is no known cure. Half of the people with NF do not have a family history of the disorder; however, a person with NF has a 50 percent chance of passing on NF with each child he or she has. Although Tami is the only one in her family with NF type 1, she learned in her late teens that she had the disorder called Von Recklinghausen's Disease. However, her tumors did not start multiplying until she was a young adult. She has had a few thousand of tumors removed. She is in constant pain, but the condition does not stop her from performing her duties as a housekeeper at the nursing home where she has worked for the past eleven years. I am encouraged by the NF research being conducted at the National Cancer Institute, the National Institute of Neurological Disorders and Stroke, the National Human Genome Research Institute and medical centers throughout the United States, funded by the National Institutes of Health. With robust federal and privately funded NF research, it is my hope that one day soon we will have a cure for this disease. ____________________