Running for Maeve

**This information has been shared with the permission of Gina Mannion

Gina Mannion, a parent of ECS 8th grader Maeve Mannion, ran 53 miles over the course of March 19–21, 2021, in honor of Maeve and individuals everywhere with Down syndrome. March 21 is World Down Syndrome Day and signifies the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down Syndrome.  

Mannion, a founding member of the athlete ambassador for the National Down Syndrome Society (NDSS), participated in the run for the third year in a row with the goal of matching her previous record of 50 miles. NDSS was established in 1979 and opened headquarters in New York and Washington D.C. The NDSS run starts at the United Nations Building in New York and ends in Washington D.C. A team of 24 runners, 12 in person and 12 virtually, work together to run a total of 270 miles. 

“It seems like a lot, but it is broken up into 71 legs,” Mannion said. “I do have a partner who runs with me– she is a school teacher from New York, and my husband, Sean, drives along the side of the route to play music– and I do it all for my daughter, Maeve”

While COVID-19 made this year’s run a little different, Maeve can often be seen waiting at the end of finish lines, handing out hive fives, and being featured on the Jumbotron in Times Square. Mannion’s runs are a whole family event in which all of her children, Maeve, 8th grade, Michael, 4th grade, Maille, 1st grade, and Mia, age 3, hold signs, cheer her on, and wait to see their mom cross the finish her run.

The NDSS run is a fundraiser with each participant's goal being $3,500, but Mannion surpassed this and raised more than $4,000. This year, the team ran through the night on highways, trails, and residential areas and made it to the end in about 52 hours and 40 minutes. Runners consist of healthcare workers, individuals who may know someone with Down Syndrome, or people who advocate for those with Down Syndrome. 

Mannion wears her team shirt and NDSS gear for other runs and races she participates in to advocate, bring awareness, and let others know that individuals with Down Syndrome are capable and should have the same rights as others.

Maeve on the Jumbotron in Times Square Oct 2019 for Down Syndrome Awareness Month.

“I don’t want Maeve to be labeled, and there are no special stores or churches for her, so why should she not just be in a regular school with friends,” Mannion said. “She has typical kid friends, and she wants to have fun and be accepted in the community. She is able to do that at ECS.”

NDSS provides several resources revolving around inclusion. It is the leading human rights organization for individuals with Down Syndrome, and it advocates against outdated laws. 

“There’s a lot of laws that people don’t know about that make it hard for individuals with Down Syndrome to be paid minimum wage, get married, get organ donations, and so much more,” Mannion said. “NDSS is working hard to change these things and that’s why we run to D.C.”.  

In the past, Mannion brought books to school to raise awareness among students about the differences and similarities of those with Down Syndrome, but she says she is now focused on Maeve’s adult life. 

”My hope is that her peers become more interested and learn about the difficulties she is faced with when it comes to how the community treats people with special needs,” Mannion said. “And then, they too will become advocates.”

For more information about Down Syndrome or to learn how you can support NDSS, go to https://www.ndss.org/.