Deb Purcell was one of the first Hunter Syndrome parents to begin blogging her family's journey in 2006. Deb and her husband, Ryan, have been working towards raising funds to help cure Hunter Syndrome since Trey was diagnosed in 2006. If you go to their Donations Page you can give to the Hunter Syndrome Research fund. Donations given through this site are tax deductible for Canadian citizens.
Jamie Fowler started this blog in 2012, the same year we started filming to tell her son, Jack’s story. Reading through the archives of Jamie’s blog reveals honest and emotional details about their lives with Jack the last 6 years.
Simon Ibell was an inspiration and a friend that overcame his struggles with Hunter Syndrome on a daily basis to bring attention to the subject of rare disease. If you knew him, you loved him.
Project Alive is in the middle of a final push to raise 2.5 million dollars to fund a human clinical trial using gene therapy to potentially cure Hunter Syndrome. Visit the site, watch the great short films to learn more about the project and please donate if you’re able to.
The Isaac Foundation is a Toronto based advocacy organization for patients and families dealing with rare disease. When the Fowler family needed an advocate to help them fight to get Jack the drug he needed the Isaac Foundation stepped up in a big way.