ALS Kids, founded by Maeve Shaughnessy (age 11) and Sydney Birchard (age 10) held a miniature golf fundraiser at PAR 2 in Monroeville on August 20, 2016. The event was just one fundraiser in a series planned and executed by this young, dynamic duo to benefit the ALS Association Western Pennsylvania Chapter.
Maeve and Sydney founded ALS Kids after being one of two teams chosen in the Be The Boss Program at St. Edmund’s Academy. Open to 4th, 5th, and 6th grade students, the “Shark Tank” type of competition sponsored by Pittsburgh-based C-leveled Corporation, introduces young students to the world of entrepreneurship by pitching business ideas to a panel of Pittsburgh business leaders. The winning teams got access to a “work coach” who helps them create business plans, logos, and marketing strategies, with the students overseeing the development of their idea and ultimately launching it.
“When we heard about the Be The Boss program, we immediately started going through ideas,” said Maeve. “About one hundred ideas later we decided on ALS Kids because ALS is something that is extremely important to both me and Sydney.”
Sydney’s grandfather passed away from ALS before she was born and Maeve’s grandma, Carol was diagnosed with ALS in December of 2014.
“It’s very difficult to watch my grandma battle ALS,” said Maeve. “We are very close and I love her very much. The disease has impacted my grandma’s breathing, walking and talking. She is now in a wheelchair and can no longer feed herself. It’s disheartening to know that I might be out swimming with my friends on a beautiful sunny day while my grandma is sitting at home watching TV, when I know she would rather be outside enjoying the day.”
ALS Kids decided their first fundraiser would be Change for Change. They handed out close to one hundred jars for people to fill with their loose change. “You’d be surprised how much money putting change in a jar can make,” said Maeve. “We made $4,000 from that fundraiser alone to benefit the ALS Western Pennsylvania Chapter.”
The ALS Association (ALSA) Western Pennsylvania Chapter operates under a shared mission with the ALS Association National Office and is the only national not-for-profit health organization dedicated solely to the fight against ALS. ALSA provides research, patient and community services, public education, and advocacy. The local Chapter helps sustain ALS patient care and support services for care givers and family members throughout 31 counties in Western PA. They also help to provide help and hope to those facing the disease, like Maeve’s grandma, Carol.
“The Chapter has helped my family and grandma in many ways,” said Maeve. “If my grandma needs a van to take her to the doctor they arrange it, if she needs a new wheelchair, they can get her one!” The support and assistance is such a help to Carol, who continues to keep up her spirits despite the progressing disease.
“My grandma has such a positive attitude and is still always laughing,” said Maeve, who is grateful the disease hasn’t dampened Carol’s spirit and finds inspiration in her grandma’s strength and resilience.
“It has made my relationship with my grandma so much stronger because she can no longer use her voice,” Maeve comments. “So I am her voice. And I want other people to know that ALS is fatal. There is no known cause or treatment, and this disease affects not just people diagnosed with it but their families too.”
Maeve invites you to join ALS Kids and The ALS Western Pennsylvania Chapter in their work to #UnlockALS. “All of us are determined to raise money to cure ALS no matter how long it takes,” said Maeve.
We are blessed to have such a loving and caring niece. Great words and work, Maeve! Love you, Aunt Suzanne and Uncle Joe
I am so incredibly proud and impressed by you girls! Your efforts and spirits are endless and will help SO many people. xoxo
Maeve - Thank you for letting me interview you to learn more about ALS Kids. Keep up the great work!
I think its wonderful what your doing to support your Grandmother and so many other people diagnosed with ALS. Keep up the great work.
Kimberly Ann Behr