Rare Disease Foundation Receives $125,000 Grant to Help Fund Clinical Trial

NASHVILLE, Tenn. - June 27, 2017 - PRLog -- Project Alive, a leading Hunter Syndrome research and advocacy foundation, is thrilled to announce it has received a $125,000 grant from the Nashville-based Clark Legacy Foundation. These funds will support Project Alive's goal to fund a cure for Hunter Syndrome (MPS II). With the addition of this grant to the funds already raised, Project Alive has raised a total of almost $400,000, or 16% towards their total goal of $2.5 million.

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. Now through the end of the year, through a documentary series, Project Alive is sharing about the symptoms, diagnosis, and prognosis of Hunter Syndrome and how the public can help fund research towards a cure for the devastating disease.

The Clark Legacy Foundation grant will go directly towards manufacture of a gene therapy vector for a clinical trial, the first funds being due in November 2017. Currently, the only FDA-approved treatment option for Hunter Syndrome is a weekly 4-hour infusion that merely stabilizes some of the disease's physical symptoms. But that option is at a cost to the health care system of approximately $400,000 per patient, per year, and doesn't even prevent the progressive neurological dementia-like decline that ultimately takes the lives of the children affected.

"Project Alive is about restoring the hopes of families for their affected children to live and grow up," notes Project Alive President Melissa Hogan of Thompson's Station, Tennessee. "We are so grateful when foundations like Clark Legacy Foundation and others come alongside those efforts. As a Hunter Syndrome parent myself, I vividly remember those dashed hopes when my own son Case was diagnosed in 2009."

To help spread the word, Project Alive is releasing a mini-documentary series featuring 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, and boasting clients such as HBO, Pixar, and Coca-Cola, the series offers viewers a glimpse into the lives of families facing this devastating diagnosis. To date, the trailer and the first two episodes have been released. The series can be viewed at ProjectAlive.org or on Facebook at www.facebook.com/projectalive/.