The purpose of this event to to raise funds to assist in the finding of a better treatment and potential cure for Hunter Syndrome (Mucopolysaccharidosis Type II or MPS II). Hunter Syndrome is an orphan disease, a disorder that has not been “adopted” by the pharmaceutical industry because it provides little financial incentive for them. It is a rare, progressive, degenerative genetic disorder which leads to significant damage to the brain and internal organs; stunted growth and physical deformities; and eventually premature death in the child’s teenage years. Currently there is no cure for MPS II, but researchers believe that Gene Replacement Therapy could potentially be the answer.
Because Hunter Syndrome is an orphan disease, there have been little to no groups advocating for the over 2,000 boys who are fighting this excruciating battle each day. To help develop Gene Replacement Therapy for those affected and their families, $1 million in funds are needed nation-wide by the end of 2015 to launch clinical trials. It is the goal of Ryan Our Lion to raise as much of that or more by the end of this year. It is our goal to save the lives of these boys.
Ryan Our Lion is an official fundraising partner of the non-profit organization, Help Extinguish Hunter Syndrome and was created on behalf of three-year-old Omahan Ryan Austin, who was diagnosed with Hunter Syndrome in December 2013.
Our event is expected to draw over 300 supporters.
(click for more on the Help Extinguish Hunter Syndrome Foundation)