Action For Aidan
Our Mission: To Cure Hunter Syndrome.
In 2014, Action for Aidan, a 5013 c non profit, was created with one clear mission: to cure Hunter Syndrome.
At the time when Action for Aidan was created, there were no clinical trials, no extended research, and there was limited hope. Remarkably, Action for Aidan has raised close to 700,000 dollars. This has been powered by YOU - our amazing community.
Over the past two years, Big Pharma has stepped into the Hunter Syndrome space and Aidan is currently participating in one of several clinical trials that are now available to Hunter Syndrome families. Because of this, Action for Aidan is gifted with the ability to broaden our mission; to improve the quality of life for boys and their families impacted by this relentless disease while we continue to search for a cure.
Thank you for your continued support of our fundraising efforts. Today we raise money for research, and money to help families living with Hunter Syndrome. Each dollar donated alleviates the burden of this disease.
What is Hunter Syndrome?
Hunter Syndrome (MPSII) is a rare, progressive genetic disorder with approximately 2,000 boys afflicted in the world today. These boys are born lacking a critical enzyme that clears cellular waste from their bodies. Hunter Syndrome, in its severe form, causes progressive loss of physical and cognitive functions, slowly and painfully robbing children of their ability to walk, talk, eat, and recognize loved ones. In the severe form of Hunter Syndrome, most children die in their early teens. Currently, the only approved treatment is a weekly 4-hour infusion that can slow some of the physical symptoms, but it does not prevent the cognitive decline and more aggressive symptoms of this relentless disease. Nor is it a cure. The infusions cost $400,000 a year, per patient.
MPS & ME
Interested in learning about Hunter Syndrome or sharing more information with your family and community? This book written by Aidan's Mom, Dr. Jennifer Carter, is a wonderful story that describes Hunter Syndrome so that anyone can understand! All funds from purchases will support research for a cure!
