For 10 years, the Pennridge Community was used to seeing a Ryan’s Run banner across Main St. in Sellersville. Ryan’s Run was a fundraising event held by the Mask and Koehler families to benefit for the National MPS Society.
Ryan Mask, son of Dorothy and Steve Mask of Sellersville, was diagnosed in 1993 at 2 ½ yrs. old with Sanfilippo Syndrome, one of the 6 MPS disorders that can affect children. Sanfilippo Syndrome is a rare genetic disorder, 1 in 60,000 are born with it. It is regressive, with no set path of how or when or to what severity the regression will occur, and is fatal. There is NO cure or treatment to date for Sanfilippo Syndrome. Some of the MPS disorders are receiving enzyme replacements which better their quality of life either through relieving discomforts or lessening medical and health complications.
5 yrs ago, on Jan. 12, 2008, Ryan’s daily living with MPS ended when he passed away at his home at the age
of 17 ½. Ryan’s Run continued that October and also the following year in 2009. 2010 was the first year the family didn’t do any fundraising. They stayed active members of the MPS Society, going to conferences and participating in Runs or fundraisers.
Ryan’s brother, Jeremy Mask, was 15yrs. old of Sellersville when he expressed concern to his Mom that they hadn’t done any fundraising in 2010. He started with making purple ribbon (color for MPS) pins out of clay, but that didn’t seem enough. What else could he do? He then suggested maybe a concert of some sort because he knew how much his brother loved music. Jeremy came to me and asked for help producing an outdoor concert for MPS. I was honored to be asked to be a part of it. Within 24 hours, 10 local bands and artists were confirmed & anxious to participate. An event was born.
It’s amazing what the love for a brother can do, plus the love Jeremy has for all those in the MPS community, from affected children and adults to siblings to parents, administrators and professionals. Some 15 year old males today have things on there mind of what they want and it’s about them having a good time, playing sports, or hanging with friends. Jeremy has shown the unselfish, beautiful side of wanting to do for others and so they can have, hopefully, a better quality of life and live longer than his brother did.
This years Concert for the Cure will now be our 3rd annual, and will be held on Sunday June 9th, 2013 behind the firehouse at the Sellersville Fire Dept Picnic Grove. Look for the banner on Main St. Jeremy is an amazing kid and highly deserves a happening kid nomination. He also recently joined the National Guard and will be leaving for boot camp directly after the concert.