Meet the Team
My son, Aiden is 9 years old and has Hunter Syndrome. I am also the mother of Karissa, Christian who is deaf and has a cochlear implant, Chance and Madison. My children are my life and passion through this experience we have all learned that everyday is a gift from God. For the past couple years I have been tirelessly fighting to help find a cure for Hunter Syndrome. Everyday I am faced with overcoming the many obstacles of insurance, educational needs and medical care. Through these experiences I have become an advocate for those that struggle with these same issues. I am dedicated to bring awareness to this rare genetic disease. My hope is to be a part of the process of finding a cure for Hunter Syndrome.
I am a full-time firefighter and husband. I learned about Hunter Syndrome when Aiden was diagnosed in 2008. From the day I learned about Hunter Syndrome and what Aiden and his family would have to go through as they dealt with his new diagnoses, I knew I had to help my friends and Aiden. The more I learned about Hunter syndrome and the more people I met and talked with who are dealing with this genetic disorder, the larger my drive became to make a difference. My goals are to provide all the support I can to the families affected by Hunter Syndrome, raise awareness about this condition and to help fund research for a cure.
My son Riley has Hunter Syndrome (MPS II). I am a 35 year old husband and proud father of 2 boys, Donovan (11) and Riley (9). Since Riley was diagnosed with the Hunter Syndrome, I have made it my mission to bring as much awareness to the disease as possible. Riley is an inspiration and a symbol of courage that I use to guide me through my life.
Jamie Fowler, Ed.S.
My name is Jamie Fowler and I am the mother to Jack who suffers from Hunter Syndrome. Jack is a gift that has forever changed my life, and has created who I am. I am a licensed school psychologist and advocate for MPS diseases. I am actively involved in the Hunter Syndrome Research Coalition where I follow and pursue research for a cure.
I also have a 3 year old daughter Juliet who keeps it real!