Published in the August 27, 2015 edition
By MAUREEN DOHERTY
NORTH READING — “Completely overwhelmed” is how Pam McIntyre describes the support her family has received in its quest to raise funds for the Sturge-Weber Foundation (SWF) with their team, “Running for Ry.”
Named for her 10-year-old son, Ryan, who was diagnosed with Sturge-Weber Syndrome (SWS) at six months, Pam and her team of 40 runners completed the famed 7-mile Falmouth Road Race Aug. 16. Their goal to raise $80,000 was surpassed prior to the race by $10,000 and donations continue to pour nearly two weeks later.
“We have been completely overwhelmed and humbled by the inspiring generosity of our friends and families. Collectively, our team has raised almost $125,000,” Pam told excitedly told the Transcript this week.
The support for their efforts has been widespread, with more than 1,300 donors contributing to that tally. Six years ago, Pam organized a team of five runners. Support for “Running for Ry” has grown each successive year, with over $200,000 raised in those first five years.
SWS is “a rare neurological disorder characterized by a facial port wine birthmark and serious medical conditions, which include glaucoma, seizures and developmental disability,” according to Pam, who currently serves as chairwoman of the SWS Foundation Board of Directors.
Ryan’s seizures are currently well managed with medication and excellent care from Boston Children’s Hospital. The Batchelder School student has been seizure-free for more than 20-months. Ryan’s family, which also includes his dad, Dan, and his twin sister, Ava, is grateful for this minor miracle as they know all too well how critically ill he became during bouts of uncontrollable seizures in 2008 and 2013.
The SWS Foundation seeks to raise awareness for this orphan syndrome through education and patient advocacy while also providing funds for research toward improved treatment options.
“Fundraising like ours is so critical to finding answers and offering hope to those families, like ours, affected by Sturge-Weber Syndrome. From the bottom of our hearts we thank everyone for their kindness,” Pam said.
Those interested in making a donation or learning more about SWS may visit Pam’s fundraising page at: https://contribute.sturge-weber.org/fundraise?fcid=457835.