I have two boys, Ethan who is unaffected and Aiden who has MPS ll. 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. Brining clinical trials to fruition is costly and demanding. Our foundation will do anything in our power to raise funds, awareness, and create paths to a cure.
- Manage and direct the foundation efforts
- Continually strengthen and focus the vision of the foundation
Jason S. Marinoff
Vice President - Operations
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.
- Manage operational execution
- Strategic planning and development
- Business review and budget analysis
Marielle and I have been best friends since middle school and I’ve known Jason since he met Marielle. Once I heard this news about Aiden, I was heartbroken, but even more determined to raise awareness and find a cure for this disease. I was ecstatic to join the Sock-it 2 Hunter Syndrome team. Together we can help fund research to find a cure for this disease and the kids that have to live with it.
- Manages the meeting notes and times (minutes of each meeting)
- Keeps track of the organization’s activities
- Keeps track of the board members’ contact information
My husband Steve and I have two sons, Jonathan (unaffected) and Ethan (MPS II). Once Ethan was diagnosed I felt compelled to help this small community of children. I was ecstatic to join the Sock-it 2 Hunter Syndrome team. Together we will give Hunter Syndrome a KO punch! Let's help fund research, bring life saving medicine and treatments to patients, and help kids one day say "I had Hunter Syndrome!"
- Keep account of receipts and disbursements
- Responsible for keeping track of the organization’s financial condition
- Quarterly financial reporting and tax records
Marielle and I became friends years ago after our oldest boys hit it of. Hearing Aiden's diagnosis was shocking, to say the least. 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.
- Board Member