Max was diagnosed with progressive degenerative disease Hunter Syndrome when he was just a year old. Hunter Syndrome is an ultra-rare genetic disease that is progressively debilitating, life-limiting and without a cure. Most do not live to see their teen years due to the progressive damage caused to their body. Each week Max undergoes a 5 hour IV infusion of a synthetic enzyme which helps to ameliorate some aspects of the disease but it is not a cure. We are closer than ever to getting a cure for Max but the trial needs more funds. We are fund-raising for Project Alive - a nonprofit corporation with the mission to cure Hunter Syndrome / Mucopolysaccharidosis II through research and advocacy.
We need $2.5 million to fund a gene therapy cure - parents, family and friends worldwide have raised an amazing $1.9 million so far and we are nearly there but we have $600k to go.
Gene therapy is a revolutionary approach to treating genetic diseases. It involves a one-time delivery of a normal copy of the defective gene which ideally causes the body to naturally produce the missing enzyme. It is the most promising ‘cure’ that these boys desperately need.
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