Saturday, October 11, 2008

Red Carpet for Research

As all of you know my passion has always been and will always be heart disease education. However, since being honored with the Mrs. International title I have been given the opportunity to branch out in my volunteer activities, and use my time to support several extremely worthy and amazing causes. This past Thursday was just such an occasion. I had the opportunity to have lunch last week with John Prentiss, whose seven year old son is affected with Neurofibromatosis. Neurofibromatosis is more prevalent than cystic fibrosis, MS, and many other conditions that we hear about regularly. Sadly, NF gets little public or media attention, and therefore, little funding for research and awareness. John’s precious son has two tumors in his small body; one on his spinal column and one in his brain stem. All may remain well for years, but John and his family live with the knowledge that everyday their worlds could change.
The neurofibromatoses are genetic disorders of the nervous system that primarily affect the development and growth of neural cell tissues. These disorders cause tumors to grow on nerves and produce other abnormalities such as skin changes and bone deformities. Although many affected persons inherit the disorder, between 30 and 50 percent of new cases arise spontaneously through mutation in an individual's genes. Once this change has taken place, the mutant gene can be passed on to succeeding generations. Scientists have classified the disorders as neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2). NF1 is the more common type of the neurofibromatosis. In diagnosing NF1, a physician looks for changes in skin appearance, tumors, or bone abnormalities, and/or a parent, sibling, or child with NF1. Symptoms of NF1, particularly those on the skin, are often evident at birth or during infancy and almost always by the time a child is about 10 years old. NF2 is less common. NF2 is characterized by bilateral (occurring on both sides of the body) tumors on the eighth cranial nerve. The tumors cause pressure damage to neighboring nerves. To determine whether an individual has NF2, a physician looks for bilateral eighth nerve tumors and similar signs and symptoms in a parent, sibling, or child. Affected individuals may notice hearing loss as early as the teen years. Other early symptoms may include tinnitus and poor balance. Headache, facial pain, or facial numbness, caused by pressure from the tumors, may also occur.
I was incredibly honored when John asked me to bring my title, and the awareness that it garners, to the first “Red Carpet for Research” benefiting Neurofibromatosis. I was thrilled to model in the fashion show presented that evening, then have the opportunity to speak on the benefits we all share from donating to incredible organizations like the Children’s Tumor Foundation, and the NF foundation. Thank you John for allowing me to be part of your amazing event.