World Down Syndrome Day is on March 21. The Miami Valley Down Syndrome Association (MVDSA) is a nonprofit organization that provides support, resources and awareness for local families who have members with Down syndrome. Down syndrome is a condition in which an individual’s cells contain an additional 21st chromosome. This extra chromosome may exist in only a portion of the person’s cells or sometimes all of them.
“We see them to be inclusive with us,” said MVDSA Executive Director, Willie Cox. “We will say there are individuals with Down syndrome and then we might call…[ourselves]… ‘typical.’”
According to the National Down Syndrome Society, an average of one in every 700 Americans are born with Down syndrome. As it is a genetic condition, there is not a cure.
“There are some traits [that are]…not universal, but they’re common, which is [low] muscle tone, small stature, upward slant to the eyes…and a single deep crease across the center of their palm,” said MVDSA office administrator Chris Steiner. “There’s no predisposition or…[anything] that the biological parent did or did not do. This happens at conception.”
People who have Down syndrome may experience some physical challenges, which may be related to their condition but not on every occasion. Around 52 percent of people with Down syndrome have a heart defect. They may have hospital stays that can be brief or last for longer periods of time.
“They grow up and….develop,” said Cox. “They enjoy and love many of the things that their typical peers enjoy doing. They go on with life. There’s a pretty broad spectrum with those individuals with Down syndrome and some are what’s considered very high functioning. They have different levels of functioning, but they love life like you and I do.”
Some individuals are able to finish high school and go on to college. There are some who have even opened their own businesses. They spend time doing things that they enjoy and have personal preferences just like everyone else.
“They will be able to do the same things as their typical peers, but sometimes it might just take them a little bit longer,” said Steiner.
The MVDSA was started in 1977 by families who found support from each other and had the desire to advocate for Down syndrome within the area. The MVDSA currently covers eleven Ohio counties. The state has six Down syndrome associations in total and some may reach out to parts of Kentucky, Indiana and Pennsylvania.
The MVDSA has various programs that serve those with Down syndrome. With the pandemic, they have not been able to do all of their normal activities, but they have found ways to still connect over Zoom and online.
“We started what they call…[‘The] Improvaneer Method’ program,” said Steiner. “They use improvisations… to learn different skills as far as life skills such as…communication, understanding eye contact [and] just building the confidence that it might take or need to get a job or communicate with their peers…or their parents.”
Cox added that the program also focuses on “body language and social cues.”
“[The areas that] they work on in that program…[are] to wait and listen and make sure you’re not talking over people,” said Steiner. “They get excited like anyone else.”
Another program offered by the MVDSA is Down to Box, which currently takes place in-person at the Title Boxing Club. It is for a wide range of ages as those currently enrolled range from 7-35. The sessions are 12-weeks long and last forty-five minutes to an hour.
“This basically teaches coordination, growth motor skills…communication and it provides a social component…that everyone’s been lacking the last year,” said Steiner. “I’ve gotten really…positive feedback. Everybody’s been loving it.”
For World Down Syndrome Day, the MVDSA hosted activities online.
“That’s a pretty big deal,” said Cox. “We are doing some celebration online – abilities for individuals with Down syndrome. We’re going to be highlighting those.”
On May 15, the MVDSA will host a walk called “Walk Your Socks Off” from 10 a.m. to 2 p.m. in Sidney, Ohio. This year, “Walk Your Socks Off” will be a scavenger hunt to follow coronavirus restrictions. The cost will be $21 for each family who wishes to participate. The goal of the walk will be to raise funds and awareness for Down syndrome.
The MVDSA also usually has a fundraiser at the Day Air Ballpark or the Dayton Dragons Stadium. There are hopes to hold this both in-person and virtually this year.
The MVDSA hosted The Buddy Walk in Dayton for about sixteen years. This event has taken place at Day Air Ballpark since around 2012. The organization has since called its walk a different name.
“It is now ‘Rally in the Valley’ to connect to our location being the Miami Valley,” said Cox. “We felt that had more of a local connection for folks.”
“Rally in the Valley” will take place on September 25. The MVDSA could use help from volunteers at this event, especially as life begins to return to normal after the pandemic.
In the past, the MVDSA held events at the Boonshoft Museum, where it was open a few hours in the evening to its families for free. It also has held a Thanksgiving event and Breakfast with Santa. It hopes to return to these events in the future.
The association also hosts a picnic at Young’s Jersey Dairy every year. Though the attendance numbers were lower, they were able to continue with this event in 2020, which was supported by Choice One Engineering. There are plans to have this event again in 2021.
“We’re very happy to be serving all those folks,” said Cox.
The MVDSA holds activities such as dance classes and Aqua-Tots through ABC Pediatric Therapy for its members.
“Some of those haven’t been able to happen as much, but that is kind of the information and connection points for us and our families and helping them get involved,” said Cox. “Some of that comes through a family grant process that we provide here to help them meet those needs.”
Those who are interested in giving their support to the MVDSA can view their events or donate on their website. They can also be found on Facebook, Instagram and Twitter. Penn Station also offered customers the option to round up their order totals to donate to local Down syndrome associations through March 21.
Rebekah Davidson
Intern