It Takes a Community
To achieve a cure, it takes families, researchers, clinicians, biotechs, and organizations working together. We are proud to be a part of this community and to help bring it together.
Get to Know the Community of Families.
Many Sanfilippo families work 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 Are a Part of The Research & Advocate Community.
Cure Sanfilippo Foundation is proud to participate in multiple research groups and support the work of partner organizations.
Recent Collaborations
History being made: ScreenPlus, the largest U.S. newborn screening study, includes Sanfilippo
History is being made! Starting this week, newborns in the largest ever U.S. newborn screening study, ScreenPlus, are being screened for Sanfilippo syndrome Type B! Addition of Sanfilippo Type A will follow in the coming months! Why invest in Newborn Screening...
Cure Sanfilippo supports North Carolina legislation HB 736 to expand state newborn screening
Cure Sanfilippo Foundation has joined other rare disease patient organizations in thanking the North Carolina House of Representatives for its leadership in passing HB 736, Timely Updates to Newborn Screening Program, and calling for the Senate to also pass the...
Cure Sanfilippo joins in calling Congress to support The BENEFIT Act
Cure Sanfilippo Foundation has signed-on to a stakeholder letter that calls for the U.S. Congress to support the Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act (S. 373), sponsored by U.S. Senators Roger Wicker (R-MS) and Amy Klobuchar...
Newborn screening pilot ScreenPlus that includes Sanfilippo Type A and B
When children with a rare disease are diagnosed at birth, they have the greatest opportunity to receive timely, approved treatments or participate in clinical trials that can provide them better quality of life and less pain and suffering. Early diagnosis and...
Foundation now accepting LOIs for Sanfilippo research funding
Cure Sanfilippo Foundation is now accepting Letters of Intent (LOI) for innovative research into Sanfilippo Syndrome (MPS III). Cure Sanfilippo Foundation seeks to support research that fills critical gaps in current knowledge across basic science, clinical care, and...
Collaborations & Partner Organizations
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.
We Encourage Families to Join the Global Registry
The 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.