May 15 each year is known to some parents as International MPS Awareness Day. But for most people, they’ve never heard of MPS. Two recent efforts by the nonprofit “Project Alive” seek to change that and raise money for a gene therapy clinical trial that offers a possible cure for one form of this disease, MPS II.
A new social media challenge called the #MPSChallenge started from a Tennessee fifth grader’s science fair project. Brock Hogan, big brother to Case who suffers from Hunter Syndrome or Mucopolysaccharidosis (MPS) II, decorated a tri-fold poster with information about MPS II and then posed questions to his young audience. When he challenged first and second grade students at his school to say “Mucopolysaccharidosis,” his mother, Hunter Syndrome advocate Melissa Hogan, got it on video and posted it to Facebook. She then challenged her friends to try to say it or donate to ProjectAlive.org, and it grew from there.
Project Alive also recently filmed a mini-documentary series featuring several families of children with Hunter Syndrome. Produced by Caravan, a Charlotte, NC – based production agency led by the father of a child with Hunter Syndrome, the series offers viewers a glimpse into the lives of families facing this devastating diagnosis. The trailer to the series was released this week and the first episode will release on MPS Awareness Day, with the remaining episodes released in the weeks thereafter. The public can watch the series at ProjectAlive.org.
Hunter Syndrome is a rare, genetic condition that affects approximately 2,000 people worldwide, almost exclusively young boys, causing progressive loss of physical, and in most cases, mental and behavioral function. The average life span for someone with Hunter Syndrome is in the early teens. Project Alive is sharing about the symptoms, diagnosis, and prognosis of Hunter Syndrome and how the public can help fund research toward a cure for the devastating disease.
To find out more about the Alive documentary series or Hunter Syndrome, visit ProjectAlive.org.