30Aug

Insight Into Sanfilippo Provided by ConnectMPS Global Registry

We spent a few days in San Diego at the International MPS Conference hosted by the MPS Society.  Alongside our ConnectMPS and Mission: Hide and Help posters was a poster published by BioMarin. This is a perfect example of how sharing patient-reported data can speed up the drug development process when shared freely. Click on image to […]

13Jun

“Compared to what Sanfilippo Children and their Families have to go through, a Tough Mudder seems like Nothing” -Mari-Elaina Garcia (JJB’s Director of Operations)   Mari has lost her mind and decided to participate in the Tough Mudder Half on July 22nd, just days before her 39th Birthday.  In lieu of gifts, she is asking for […]

19Sep

The Launch of MISSION: HIDE AND HELP

We are more than excited to launch our new campaign Mission: Hide and Help This is a grassroots social experiment meant to help diagnose Sanfilippo Syndrome.  Aimed at doctors and executed by kids, we are mixing our love of Pokemon with the urgency to find more patients.  “Nobody can find rare like you can”. Read full press […]