Driving Collaboration

We’re A Community.

Many Sanfilippo families working together with our Foundation to raise awareness and significant funding toward our annual fundraising goals.

We Keep Families Connected to Research and Fundraising.

We coordinate regular “Family Conference Calls” (typically every quarter) where we share the latest information, largely the progress of research and clinical trials, as well as current fundraising and awareness strategies and support.

We Press For Research Findings To Be Shared.

The research we fund: We do our best to hold the researchers to standards of sharing their findings so others may build upon it, enabling a cure faster.

Encouraging Families to Join the Global Registry

ConnectMPS registry logoThe more the patient population for Sanfilippo Syndrome is represented fully in a registry, the more interest there will be from industry to pursue and develop treatments. That’s why we fully inform our families about the existence of the Global MPS/ML Registry called Connect MPS.

If you are a new family or existing family with a child with Sanfilippo Syndrome, please make sure your child is registered.