Published in the September 1, 2016 edition
THE 2016 RUNNING FOR RY/Sturge-Weber Foundation Falmouth Road Race Team raised over $125,000 on Aug. 21. Pam McIntyre of North Reading (kneeling at right center) is chairwoman of the SWF Board of Directors. She ran her first Running for Ry race seven years ago with a team of five supporters in honor of her son and it has grown every year since then. To date, they have raised over $465,000. (Courtesy Photo)
By MAUREEN DOHERTY
NORTH READING — Mission accomplished! And what an incredible accomplishment it was!
The “Running for Ry” road race team, spearheaded by the McIntyre family of North Reading to benefit the Sturge-Weber Foundation, completed another successful Falmouth Road Race on Aug. 21.
The team, led by Pam McIntyre and now in its seventh year, has grown to 52 runners, many of whom have ties to North Reading. This year, their combined efforts raised more than $125,000 from 1,200 donors.
With this year’s contributions, these runners have raised more than $465,000 to benefit the research and advocacy efforts of the Sturge-Weber Foundation (SWF), which is dedicated to improving the quality of life and care for all people living with Sturge-Weber Syndrome (SWS). It’s known as an orphan syndrome because it affects so few people.
Pam has served as the chairwoman of the SWF Board of Directors for the past two years. As of this week, her personal fundraising goal to reach $20,000 was exceeded by nearly $700 from over 130 supporters. She is so grateful to the community and her friends and family for their continued support, particularly the 18 “Running for Ry” team members from North Reading and Reading, all of whom helped raise thousands of dollars on their own for this cause.
Out of the team of 52 runners this year, 10 runners in addition to Pam call North Reading home — Michele and George O’Connor, Greg Melo, Jamie Trickett, Coralee and Don Craig, Nancy Carpenter, Julie Brady, Kathleen McTeague and Kelly Matthews. Also joining forces with Pam on the Running for Ry team were another eight runners from Reading — Ellen and Matt Lamarche, Heather Wicken, Maria Puglielli, Nina and Mike Conway, Jen Battaglia and Carol DiPietro. Their camaraderie is just as important as their dedication to this cause for the McIntyre family, she told the Transcript.
Pam and Dan McIntyre’s son Ryan was born with a port wine stain facial birthmark, a hallmark sign of SWS. Although not all babies born with such a birthmark have the syndrome, Ryan’s diagnosis was confirmed at six months of age and he had his first seizure at nine months. In addition to seizures, this rare neurological disorder also causes other serious medical conditions to varying degrees, including glaucoma and developmental disabilities. With one exception earlier this year, Ryan has been seizure-free for nearly three years thanks to a vigilant medical protocol coordinated by his family and his doctors at Boston’s Children’s Hospital.
The road to raising nearly half a million dollars for the SWF had humble beginnings. In 2010, Pam joined forces with another mom who was running on behalf of her own son. There were just five runners on the original “Running for Ry” team.
Ryan, who is now 11, completed the fifth grade at the Batchelder School in June and is excited to be heading to North Reading Middle School starting next week with his twin sister Ava.
Race also dedicated to Ava
Pam ran this year not only for Ryan, but also for their family’s unsung heroine, Ava.
“This year, although I will always be Running for Ry, I am dedicating my 7 miles to my very special daughter Ava Brooke McIntyre. It’s no secret that twins have a special bond, but when one sibling has a disability, I think the bond and relationship rises to another level,” Pam wrote to her supporters on her Facebook page a few days before the race.
“From the very early days of Ava speaking for Ryan to current ones of her reading and spelling for him, she has been his greatest ally, advocate, partner in crime and love,” she said.
In addition to supporting her twin brother, Ava also enthusiastically helps her parents and the Running for Ry team by assisting with race preparations, which her mother said includes welcome bag stuffing, race day set-up and driving with her mom all over the town of Falmouth and around the Cape during her summer vacations to help pick up gifts and shop for supplies.
“Life is not always easy for her with Ryan’s continuous stream of doctor appointments, extended hospital stays and unfortunately witnessing some of his seizures, but she proves her resiliency with a constant smile and grace,” Pam wrote.
“The Falmouth Road Race Sturge-Weber Team represents hope and support for all the families living with SWS. Although Ryan has the diagnosis, she lives with SW every day as well,” her mom emphasized.
During a backyard BBQ the McIntyre’s held for 130 family and friends before the event, Pam surprised Ava with a special toast. She read excerpts to Ava from the letter: “Dear sibling to a child with special needs, let me tell you why you’re amazing,” which was written by a self-described “momma of a child like you and your special sibling.” Pam told the Transcript that there “was not a dry eye in the house” after her toast.
The letter reads in part: “…I heard you deal with more than any child should. Your parents spend a lot of time away from you. You know they’re taking care of your sibling, possibly bringing him or her to the doctor. Maybe your sibling is admitted in the hospital often; your parents might be on the phone taking care of insurance business or even physically caring for your sibling. I know, my friend. You see this more often than not.
“You see the love your parents have for your special sibling, and it’s being embedded into your heart. You see the patience they exhibit when caring for him or her, and it’s being buried into your soul. You see that your parents never stop trying to get what your sibling needs, and it’s being ingrained into your mind. You see your parents exhaust themselves so your sibling and you are well taken care of, and you’re learning from this. You may not know it, but all of these little things are teaching you traits of how to be an amazing person.”
The upside of this unique relationship was also described in the letter: “You get to experience a friendship like no other. Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart. They look at you with those beautiful eyes and know you’re there for them no matter what. The bond you have is indescribable. You’re their sibling, their friend and their protector. Your sibling might not speak verbally, but we both know your hearts together carry on conversations us adults could never possibly understand. And I tell you what, we’re so extremely jealous.”
The message in the letter to siblings like Ava, whose life lessons have etched in their hearts what is truly important, concludes on a upbeat note: “When you were introduced to your sibling with complex needs for the first time, that moment in time is pinned in the stars, for it was then that your destiny was determined. You will be an awesome human being and you’re going to change lives for the better. … all because you were the sibling of a child with special needs. Rock on, my brave friend.”
Grant awarded
Pam explained that the SWF seeks to combine collaborative education and advocacy efforts in tandem with translational research, effective management and public awareness of the disease.
The financial support provided by the SWF Road Race Team provides much of the budget for this small organization. Recently, the SWF was awarded the Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI). This grant will allow the SWF to bring together global thought leaders in the field of SWS to focus on “the future of patient-centered research,” she said. As chairwoman of the SWF Board of Directors, Pam will attend the conference this fall and she is very excited about the possibility of making a positive difference in the lives of all people affected by SWS.
For more information on the SWF and the McIntyre family’s journey visit Pam’s page at https://contribute.sturge-weber.org/fundraise?fcid=686868 and follow the links.
