Kidsburgh Hero: Maeve Shaughnessy of ALS Kids

Maeve Shaughnessy was 9 years old when her grandmother was diagnosed with ALS in 2014.

But rather than feel helpless against the degenerative disease that was progressing on Carol Shaughnessy, Maeve’s instinct was to take action to help Grandma and others affected with Lou Gehrig’s disease.

She started out making and selling rainbow loom bracelets, then progressed to lemonade stands at her home in Ross Township. She organized Carol’s Crew, which included her older sister, Emma, and two cousins, Delainey and Mackenzie. The mission was to raise money to benefit the ALS Association Western PA Chapter’s annual Walk to Defeat ALS.

But Maeve wasn’t satisfied.

An opportunity arose early last year at her school, St. Edmund’s Academy, with a program called Be the Boss. Kids were challenged to pitch a business plan. Maeve and her good friend Sydney Birchard – whose grandfather died from ALS before she was born — created ALS Kids: Kids Finding a Cure as an arm of the local chapter. Their business was one of two ideas selected from the school competition. The business partners received three months of mentoring to design, develop and grow their business.

The girls took off from there, getting a website, business cards, and marketing materials and hosting 5-K runs, golf outings, and lots of smaller fundraisers, too.

Maeve networks with contacts and business leaders to keep the donations coming. In May 2016, she traveled with the ALS to D.C. to meet with national leaders and advocate for prioritizing funding and policy.

Grandma died last Thanksgiving Day, but the loss has only compelled Maeve to continue her fight with more vigor.

Now 12, Maeve recently caught the city’s attention as one of the participants in the ALS CEO Soak at PPG Plaza earlier this month. A first-time event, dozens of CEOs and others raised money for ALS by standing in the PPG fountain at lunchtime and getting doused as the fountain went on.

With a cheering crowd (and lots of laughs), the event met its goal of $50,000. Maeve did more than her share.

She presented a $15,000 check, representing the amount of money ALS Kids has raised to date.

Looking like a pro herself, she took the microphone and addressed her CEO peers and the crowd with her message. (Her business partner Sydney was away at camp for the summer and unable to attend.)

Maeve’s mother, Amy, continues to be impressed with her daughter whose poise and maturity mark her as a professional.

“It’s kind of funny because Maeve has social anxiety, but for whatever reason when she’s talking about ALS, it just goes away,” she says. “She’s in her natural element. It really is amazing.

“If there is a silver lining, this whole disease gave Maeve a confidence she was lacking as far as being around other people,” Amy says. “She just grabs that little microphone no matter where she is and she speaks. Nine times out of 10, she’s doing a little spiel that she didn’t even write down ahead of time.”

Next up for ALS Kids is a mini-golf outing at Par 3 Golf Course in Monroeville on Sept. 9, and another 5-K race at North Park. Maeve is working to grow their social media reach, too.

“We will continue to do it until there is a cure,” Maeve says. “And I think it will continue to grow with us as we get older. I really haven’t ever thought about stopping it because we are so young and it’s so new. I see us as having more fundraisers and making a lot more money.”