Cpl was decked out in blue today to create awareness for MPS, also known as Hunter Syndrome. We have been painting our offices blue for the last five years – inspired by our colleague Libby Kelly, whose son Max was diagnosed with MPS 10 years ago.
To encourage awareness and raise funds this year we had a charity breakfast, with all proceeds going towards MPS charity www.projectalive.org A pair of Ed Sheeran tickets were also raffled off to employees, which raised €330, while later this summer Cpl Director Lisa Holt will complete a 500km cycle for MPS.
MPS, or Hunter Syndrome, is an ultra-rare genetic disease that is progressively debilitating, life-limiting and without a cure. It occurs almost exclusively in males and currently affects less than 2,000 worldwide. Most do not live to see their teen years due to the progressive damage caused to their body. Approximately 20% of those affected by Hunter Syndrome do not suffer cognitive impairments or regression and may have normal intelligence but a continuum of physical symptoms.
Max was diagnosed with progressive degenerative disease Hunter Syndrome when he was just a year old. 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. As he gets older the impact of the disease is taking its toll more and more on him physically and emotionally. We are closer than ever to getting a cure for Max but the trial needs more funds.
A cure is desperately needed but as the condition is so rare, there is little research focused on the disease. Awareness breeds interest, interest breeds research and research will breed a cure for Max and those affected by MPS.