Having a child with Hunter Syndrome is a journey nobody wishes to go on, but one where it is now my mission to advocate and raise money for improved treatments and research for a cure.
Marielle Marinoff
President
Aiden's will and determination has motivated me to help bring awareness and much needed funds for a cure. The families we met and the children I have interacted with have defined what strength truly is.
Jason Marinoff
Vice President
Once Ethan was diagnosed I felt compelled to help this small community of children. Let's help fund research, bring life saving medicine and treatments to patients, and help kids one day say "I had Hunter Syndrome!"
Emily Lieber
Treasurer
Being able to connect with other people in the world of Hunter Syndrome makes all the difference in the world to families who face this diagnosis.I hope to be able to help not just the boys of Hunter Syndrome, but their families, as well
Amanda Lieber
Secretary
Marielle and Jason have shown to be the most amazing parents and I am extremely honored to be joining this organization to help raise awareness for a disease most know little about and hopefully be a step closer to finding a cure.
Jeanette Meyer
Board Member
My son, Ethan, is diagnosed with Hunter Syndrome. My wife, Emily, and I know the pain and suffering caused by this disease.
