Going out with a bang: Running for Ry team aims to end 10-year run with $1M raised for SWS

Published in the July 18, 2019 edition.

By MAUREEN DOHERTY

NORTH READING — Nine summers ago, Pam and Dan McIntyre could not have imagined being in this position. What had started out as Pam and a few friends deciding to run the Falmouth Road Race to raise awareness about Sturge-Weber Syndrome – a genetic condition affecting her young son and another runner’s child – was a huge success.

That first effort, which the McIntyres dubbed “Running for Ry” in honor of their son, Ryan, raised $27,000 to support a grassroots non-profit organization called the Sturge-Weber Foundation (SWF).

From such humble beginnings, the McIntyres were hooked and Running for Ry has grown year after year. Known more formally as the SWF Falmouth Road Race Team because it is comprised of several families affected by SWS, through its first nine years the McIntyres and their vast network of friends and family have raised $740,000 from 7,454 donors. There have been 107 different runners participating on their team – some ran one race, others have come back year after year.

After last year’s race the McIntyres decided that 2019 would be the last hurrah for this phase of their commitment to the cause. They now have just one goal in mind for the race being held in in that seaside town in four short weeks – closing that $260,000 gap to reach a remarkable $1 million in donations to benefit the mission of the SWF.

The nonprofit foundation, created in 1987, funds research and also provides valuable support to SW families nationwide. Pam served a combined six years on its board of directors, including a couple of years as its president, so she fully understands the lifeline the foundation provides to those with SWS and their loved ones.

“I don’t think it’s unrealistic, but I think it’s a stretch goal. I think it’s nice to have goals and we all like even numbers, so to be able to walk away from this saying we raised a million dollars would be incredible!” Pam said.

The fact that this year’s SWF team numbers close to 80 members makes this dream all the more possible. But they are also very informal in their fundraising approach, letting each team member conduct its own mini fundraising activities and set its own personal goals.

The 2019 fund raising year began with Ryan contributing the proceeds from his successful pop up art show held at the Hornet MarketPlace last December. He is a prolific artist and his work in a variety of mediums sold like hotcakes at that annual event.

In May, they held their annual Fit Rev Games in North Reading spearheaded by family friend Michelle O’Connor who owns the studio and who has supported this cause for years as a runner in addition to helping many local team members stay in shape so they can also manage the seven-mile road race better than the average weekend warrior. This year will mark O’Connor’s seventh year as a runner on the team, making her the longest participating team member besides Pam. This one fundraiser O’Connor organized raised about $5,000 this year, Pam said.

Other local teammates have organized their own small fundraisers throughout the year to reach their base of supporters, from wine tastings and small get-togethers at local restaurants to more organized events, corporate matching grants or simply asking for support from friends, family, organizations and employers. The growth of social media has also played a large role in enabling ordinary people expand their base of support as well.

What has always impressed Dan is the fact that each donation received by a team member represents a conversation centered on raising awareness about Sturge-Weber Syndrome, which is one of countless orphan diseases that fly under the radar of most people.

“Think about the number of people who have heard about Sturge-Weber now based on 10 years ago if we didn’t do this. Who knows how many people we have touched? We’ve made new friends with families who have children with Sturge-Weber. It’s just spider-webbed, and that is one of your objectives” in grassroots fundraising, Dan said.

“To have that transaction go down, you had to say the words ‘Sturge-Weber’ so I am in awe over that,” he said about the nearly 7,500 individual donations they have received. “It’s a conservative number. People see the web pages and the different runners’ pages, and share it with their friends and family,” he added.

Since this is their last year they would love to find that “white knight” who could help them cover expenses such as their team shirts, the cost of registration and in-kind donations such as bottled water, alleviating those out of pocket expenses.

The McIntyres organize a post-race party in Falmouth to thank all of their runners each year. Pam says it’s like planning a wedding. And planning for an event that continually grows in popularity, while managing their careers plus the busy lives of two teenagers, can get pretty hectic.

“It’s all-consuming from April to August,” she says. Thankfully, they enjoy the support of many friends. One in particular, who serves as their right-hand manager is Melissa Grew. She has earned her the unofficial title of “race director.” Pam says they couldn’t pull this off without her help. If Grew’s name sounds familiar it’s because she’s the engine that keeps the Hilltop Nursery School humming.

What is SWS?

The McIntyres had never heard of SWS until their twins, Ryan and Ava, were born nearly 15 years ago. Ryan had the telltale sign: a port wine birthmark over his left eye and forehead. But doctors told them they would not know for sure if that meant he actually had SWS without an MRI to look for the lesions that would form on the brain of a person with SWS. As a baby, Ryan had his first seizure at 9 months.

In addition to the complications of repeated seizures, people with SWS often experience other complications such as developmental delays and learning disabilities and they remain at risk of developing glaucoma. As an infant and young child, Ryan had multiple seizures resulting in many lengthy hospitalizations. Through the minor miracle provided by a cocktail of anticonvulsants and the diligence of his physicians at Children’s Hospital in Boston, Ryan has remained seizure-free for an amazing 5 years and 9 months.

Having just completed his third year at The Cotting School, he is excited to move on to the Upper School at Cotting in the fall. He recently earned a gold medal in the pentathlon at the Summer Special Olympics, held at Harvard, for his efforts in those five track events – shot put, long jump, 400m, 100m and high jump.

Ryan said the highlights for him were the shot put, long jump and running. His mom added another highlight – the fact that his time in the 100 meter dash was faster than the time his twin sister had run at her track meet this past spring. “He beat Ava’s PR for her 100 this year. He ran the 100 in 12 seconds,” Pam said.

His father added, “He shaved a second off his time at trials. That was a street fight for a 100 meter!”

Ryan also enjoys baseball and softball. He hit a home run in a recent game. “It was a bullet. It literally left the park in three seconds,” Dan said.

Asked what he likes best about attending The Cotting School, without hesitation Ryan said, “Probably that everyone is really social. Even if you are nonverbal you still have an iPad to talk. Everybody knows each other. There’s no such thing as a person who is left out at our school. There’s a little bit of drama, but you can’t get away from that!”

His favorite subjects include industrial arts, where he learned to make a birdhouse this spring, as well as working behind the scenes in the performing arts class, and “anything that involves art or that is active.” He’s also pursued an interest in science.

During the race, Ryan will help his dad with logistics. He will also be busy this summer creating artwork to give as gifts to thank the runners. And each thank you card to their team’s supporters includes an original drawing by Ryan.

Coming full circle

“We have a lot of kids running this year, so that is what I love the most – Ava is now running for her brother and it has come full circle. She has a great appreciation for what this race has come to represent,” Pam said.

Mother and daughter will run together on August 18. “We also have a bunch of other kids who have jumped in for that reason as well. Two other friends who have been running for years, their daughters are running with Ava. We have another family in town (and) all three of their sons are running. We love passing the baton to the next generation,” Pam said.

Ava said she wanted to run this year “because it’s the last year.”

Among those who have committed to run are the entire Carpenter family, led by Nancy, who is now running in her sixth Falmouth Road Race, and her three sons, as well as Ava’s friends Ella McTeague, Madeline Lamarche, Julia Barbato, Jack Fischer, Brady and Casey O’Connor and Kieran Schultz, Pam said.

“Ryan’s neurologist is running on our team this year too,” she said. Her name is Dr. Anna Pinto. “She is the liaison between the Sturge-Weber Foundation and Children’s Hospital Boston. She is actively involved in the foundation and she is one of the co-heads of the Sturge-Weber clinic at Children’s. She’s is a doctor to many of the runners that day. She is amazing,” Pam said.

Silver lining

“The day of the race is the most meaningful. The race to us represents our silver lining. It is the weekend of the year that we embrace having Sturge-Weber and we’re thankful for everyone that it has brought into our lives. A lot of the people who are running on our team we didn’t know 10 years ago. It is just amazing the friendships that have developed over the years So many people have come together to support us. It leaves you speechless,” Pam said.

While the end of this era will be bittersweet for the McIntyres they know it’s the right time and they are excited for the next phase of their lives. When they started on this journey, Ava and Ryan were entering kindergarten; now they are getting ready to transition into high school. “We’ve been asking so much of so many for so long,” Pam acknowledged.

“As Ryan has come to understand that this is about him and his Sturge-Weber community I truly believe that it has helped to shape who he is, knowing that he has an army of supporters who show up for a weekend in August for a hot, hilly, nasty race and who put themselves out there asking for donations from friends and family – fund-raising is not easy. It has shaped the young man he has become. It’s a confidence builder. It’s everything. And we feel beyond fortunate and blessed to have this village of supporters,” Pam said.

To contribute to Running for Ry visit Pam’s page at: https://www.crowdrise.com/o/en/campaign/sturge-weber-foundation/pamelamcintyre1.