Awareness for World Down Syndrome Day
Danielle Thompson will run for The National Down Syndrome Society’s fourth multi-day relay run.
LOWER PROVIDENCE >> Seven years ago, Porter Thompson helped raise awareness about Down syndrome in a big way — via a bedtime story photo taken with his sister Penny that loomed large over Times Square.
Porter, now 9 and a student at Arrowhead Elementary School, is still motivating his mom and others to raise awareness, this time for The National Down Syndrome Society’s fourth multiday relay run in celebration of World Down Syndrome Day on Sunday, March 21.
The three-day journey will take place in-person between New York City and Washington, D.C., and virtually in local communities like Lower Providence across the country, with a team of 25 runners completing the course over more than 48 hours, day and night, through the northeast countryside and urban centers of New York City, Newark, Princeton, Philadelphia, Wilmington, Baltimore and Washington, D.C.
“There’s a group of 11 runners who’ve been fully vaccinated who are running the course by starting in New York City Friday morning, and a little more than half the team is running virtually, just to be safe,” explained Danielle Thompson, who had completed four miles on Friday and would manage another 32.1 miles by Sunday in honor of World Down Syndrome Day.
The number 321 (the written out date of March 21) is significant, as individuals with Down syndrome have a third copy of their 21st chromosome, noted Thompson, who is running in collaboration with another virtual mom in South Carolina.
“We text and Facetime at the beginning of our runs and at the end of our runs, but we’re each running from our homes,” said Thompson, an accountant for a biopharma firm in Malvern.
Each person that’s participating in the run has a goal of raising $3, 500 for the organization.
Thompson had another $800 to reach her goal over the weekend.
“We’ve had a lot of people donate $20 here and there and it all adds up,” she said. “This is one of the major fundraisers for the National Down Syndrome Society.”
Thompson is also on the board of the Montgomery County Down Syndrome Interest Group (MCDSIG).
On Sunday moms from the group would be participating in a virtual “Rock Your Socks” event.
“Everyone is encouraged to wear mismatched socks. Chromosomes work a little bit like socks, especially the way they’re shaped, especially the 21st chromosome and because our kids have a mismatched pair we wear crazy socks on World Down Syndrome Day,” Thompson said. “Most people in our group are not gathering because our kids are high risk medically. So we’re erring on the side of caution and just doing virtual things. We’re doing a little singalong on Sunday morning on Zoom, just for the group, just for the younger kids, basically. But anyone can do Rock Your Socks from mcdsig. org.”
Thompson is eager to raise awareness about the Montgomery County Down Syndrome Interest Group.
“Because Down syndrome is a medical condition, it’s protected. Doctors can’t say, ‘here’s our list of families that have kids with Down syndrome,’ and agencies can’t share that list either. So anytime we can get the group name out there is good. There may be families who haven’t heard of us and anytime we can make a connection with a family will help. We learn best from each other. We are so thankful to have MCDSIG in our community.”
According to its website, ndss.org, The National Down Syndrome Society is the leading human rights organization for all individuals with Down syndrome, envisioning “a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.” Founded in 1979, NDSS supports and advocates for the Down syndrome community by focusing on three key areas of programming: Resources & Support, Policy and Advocacy and Community Engagement. Within these focus areas NDSS engages in various activities, events and programs such as the National Advocacy & Policy Center, which seeks to create systemic change through engaged advocacy.
Due to advances in medical technology, individuals with Down syndrome are living longer than ever before, NDSS noted. In 1910, children with Down syndrome were expected to survive to age nine. With the discovery of antibiotics, the average survival age increased to 19 or 20. Now, with recent advancements in clinical treatment, most particularly corrective heart surgeries, as many as 80 percent of adults with Down syndrome reach age 60, and many live even longer. More and more Americans are interacting with individuals with Down syndrome, increasing the need for widespread public education and acceptance.