Jaxson Karp along with his parents Shelley and Ian talked about what Tay-Sachs is and how you can participate in the fundraiser. Hi! My name is Jaxson Karp. I live here in San Diego, CA. I am a 9-year-old, sweet, funny, loving boy and have a rare genetic disorder called Juvenile Tay-Sachs. Juvenile Tay-Sachs is a genetic disorder caused by the absence of a beta-hexosaminidase (HexA) enzyme. This missing enzyme causes cells to become damaged which causes my brain to not do what I want it to do! There is no cure at this time, but there is hope for a gene therapy treatment in the near future that can possibly stop the progression of the disease. Without treatment I will suffer from muscle weakness, lack of coordination, swallowing difficulty, seizures, loss of ability to communicate, see, walk, and eat by mouth. This disease progresses at it own pace; there is no timeline for life expectancy. How Can YOU Help Today? We need your help to find a cure to stop the progression of this disease. RESEARCH IS SO CLOSE! If you can help with a fund-raiser, rally, simple donation, or just spread the word – everything helps! National Tay-Sachs & Allied Diseases Association (NTSAD) is one of the oldest non-profit organizations dedicated to helping families. Connects families through their Family Services program including annual family conferences, fundraisers, and awareness materials; Funds research on all levels and facilitates the steps toward clinical trails; Educates families and the public to promote building healthy families though screening; and Advocates for families with insurance, and supplemental funding so they can get the help they need to care for their affected loved one. For more information on this disease and how you can help visit www.NTSAD.org