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Teens who started ALS nonprofit in elementary school honored for philanthropy

Maeve Shaughnessy and Sydney Birchard found out early that they shared a common pain that can never fully heal.

The two 16-year-olds met during their elementary school days at St. Edmund's Academy in Squirrel Hill. It turned out they both had loved ones who died from amyotrophic lateral sclerosis, aka ALS. The disease took Maeve’’s grandmother in 2016 and Sydney’s grandfather in 2000. While Maeve got to know her grandmother a bit, Sydney never had a second of time with her grandfather.

“Everyone should have an opportunity to meet their grandparents,” Sydney, of Wilkinsburg, told the Post-Gazette. “When they’re taken by a disease, it robs you of opportunities and what could have been.”

In 2016, the two collaborated on launching ALS Kids, a nonprofit focused on raising money for the ALS Association Western Pennsylvania Chapter and its ongoing efforts to fund ALS research and support those living with the disease. At the time, Maeve, of Ross, was only 10 years old and Sydney was only 9. Their efforts over the past six years have so far resulted in $50,000 worth of donations to the ALS Association.

Their hard work was formally recognized recently when the Association of Fundraising Professionals bestowed upon them its 2022 William R. Simms Award for Outstanding Youth in Philanthropy. The two received their awards during AFP’s recent ICON 2022 gathering in Las Vegas.

“When my mom called me, I was like, ‘Oh my gosh!’ ” Maeve said. “It’s so crazy to think about, because I never expected anything like this to happen in my life, especially so young.”

Maeve and Sydney are now high school sophomores, the former attending Oakland Catholic and the latter a Shady Side Academy student. ALS Kids started out as a lemonade and popsicle stand benefitting ALS that they set up on a whim. In fourth grade at St. Edmund’s, the two had the opportunity to pitch a business idea through the “Be The Boss” program. That’s how ALS Kids was born.

Since then, they have devoted a great deal of their time to raising money for the ALS Foundation. They’ve done everything from selling mugs and stress balls to organizing 5K runs, softball tournaments, miniature golf outings and online auctions, with all the proceeds going toward their cause of choice.

It’s not like ALS Kids is all these two have going on. Sydney plays field hockey, basketball and lacrosse at Shady Side. Maeve also plays field hockey, babysits and works at a pizza shop in Fox Chapel. Maintaining ALS Kids feels like second nature to them at this point because it’s something they’ve done for so long that has become a true calling.

“There’s always more you can do,” Sydney said. “I feel like everyone has something they’re super passionate about. Ours just happens to be philanthropy and giving back. ... It brings me joy seeing other people happy and how we’re helping the community.”

The ALS Kids duo had a local champion in Dave Tinker, vice president of advancement with the nonprofit Achieva and a former board member of Western Pennsylvania’s AFP chapter. Curing ALS has been a cause close to his heart ever since one of his college fraternity brothers died of the disease. Five years ago, he attended a charity walk organized by ALS Kids, which was when Maeve and Sydney first came on his radar.

“They were always around and their name was always said,” Mr. Tinker said. “I looked into it a little bit more, and I was pretty amazed by what they were able to do.”

AFP is an international association of more than 35,000 fundraising professionals worldwide, he said. He had previously helped the teens win a similar youth philanthropy honor through AFP’s local chapter. He once served on the AFP international committee that dealt with awards, so he had a feeling ALS Kids “really would shine” against global competition as well. So he nominated them for the William R. Simms Award.

As someone who began fundraising for various causes when he was 19 and has been in that world for 32 years now, Mr. Tinker believes that what these two young women do deserves to be acknowledged “at such a high level.”

“I’m still amazed by it, and I look forward to all the things they’re going to continue to do with it,” he said. “They’ve carried this on and were able to continue to do things through COVID. They still kill it.”

Neither of them do this work for the accolades, of course. It’s the ALS patients they meet who are constantly reminding them that what they do is more than worth it. Maeve said she is always floored by how those folks continue “fighting with such grace” and rarely complain about their condition.

“It’s a keep-the-ball-rolling kind of deal,” she said. “We’re so proud of what we’ve accomplished. ... Anything we can do, we want to do.”

Sydney echoed those sentiments: “Because Maeve and I are so passionate about it, we’ve been able to do it for six years. We love giving back, and we love this community of the people we’ve met through ALS Kids.”

Joshua Axelrod: and Twitter @jaxelburgh.

First Published May 15, 2022, 6:00am


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