Lisa's Cycle to Cure Hunter Sydrome
Donation protected
My colleague Lisa Holt is raising funds for my amazing boy Max by cycling a whopping 635 kilometres from the Atlantic to the Med with a group from the Dublin Chamber -joined by our colleague Stephen Mullin who is also completing the cycle. They start on the 8th September through to 12th September, and will cycle from one coast to the other - from Biarritz on the Bay of Biscay to Narbonne Plage on the Med.
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.
See https://projectalive.org/
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.
See https://projectalive.org/
Organizer
Libby Pust
Organizer
County Dublin
