16 years after his brother ryan passed away from the disease, pennsylvania native jeremy mask remains committed to the fight against sanfilippo syndrome

1/26/2024

Jeremy Mask with his mom Dorothy

Growing up as a little kid, Jeremy Mask never looked at his older brother Ryan as being "different". He just knew him as his brother - and his best friend as well. The Pennsylvania native - a nine-year U.S. military officer and recent police academy graduate - lost his brother to Sanfilippo Syndrome (aka, childhood Alzheimer's) 16 years ago, but Jeremy continues to honor and build upon Ryan's legacy in various ways - by mentoring other rare-disease and Sanfilippo siblings with navigating their own journeys; traveling to MPS conferences to soak in the love and affection of other Sanfilippo kids (his own way of feeling reconnected with his own brother); and even babysitting, entertaining and playing with them while in town - to give some of the parents some well-deserved (kids-free) time to themselves for a change, even if just for a few hours. In addition to that, Jeremy and his mom Dorothy have been hosting/organizing the "Concert for a Cure" event in their hometown for many years now. After all, Jeremy said, that's what Ryan loved - listening to music. Concert for the Cure is an annual, all-day concert featuring 4-5 local bands, where all money raised goes to the fight against Sanfilippo Syndrome (specifically, to the National MPS Foundation, a nonprofit 501c3). But it's also been a place where Sanfilippo families from across the area have an opportunity to get together, meet one another, share stories, and just feel a little less alone in their journeys - all while enjoying great music - which is exactly the way big brother Ryan would have wanted to it.

In the clip below, Jeremy talks about starting the Concert for a Cure (to raise money and awareness for Sanfilippo Syndrome), and why he continues to stay connected to the Sanfilippo community.