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 […]

11Apr

MPS awareness day is coming, here is an update to cheer us all up.

Biomarin is full speed ahead with their clinical trial. If you haven’t updated your surveys on our patient registries, now is a good time to do so. Help BioMarin help us. https://connect.patientcrossroads.org/?org=ConnectMPS If you haven’t registered your MPS, ML or Glycoprotein family members, this would be a great way to celebrate MPS awareness day. Sometimes […]