Welcome to the Sanfilippo Project
  • Home
    • VIDEO LIBRARY
  • Learn
    • Learn: The Latest
  • Share
    • Share: The Latest
  • Pay it Forward
    • Pay it Forward: The Latest
  • About the Sanfilippo Project
  • Intro to the Roundtables
  • Navigating coming policy changes
  • Mean words hurt

The Latest: Pay it Forward

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

0 Comments

 
PictureJeremy 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.


One thing my brother always enjoyed throughout his entire life, regardless of what condition he was in, was listening to music." 

Picture
Jeremy with older brother Ryan as young kids

To see the full (10-minute) interview with Jeremy, click below:
My "team" is my family. They've always been my biggest allies in life".  


Picture
Jeremy and his family hosting the annual Concert for the Cure to MPS in Pennsylvania

Picture
Jeremy and Ryan enjoyed coloring Easter eggs together
0 Comments



Leave a Reply.

    Picture

    Author

    Mike Dobbyn,
    Sanfilippo dad

    Archives

    August 2024
    April 2024
    January 2024
    December 2023
    November 2023
    October 2023

    Categories

    All
    Legacy
    Parent Stories
    Pay It Forward

    RSS Feed

Picture
© 2024 Sanfilippo Project
ABOUT
​PARTNERS
  • Home
    • VIDEO LIBRARY
  • Learn
    • Learn: The Latest
  • Share
    • Share: The Latest
  • Pay it Forward
    • Pay it Forward: The Latest
  • About the Sanfilippo Project
  • Intro to the Roundtables
  • Navigating coming policy changes
  • Mean words hurt