Foundation Guide

A Tour of Our Global Community of Giving

Kicking off World Down Syndrome Week is World Down Syndrome Day on March 21, 2022. The day was first observed by the Down Syndrome Association Singapore in 2006, where the organization launched the World Down Syndrome Day website, showcasing activities and initiatives around the world. Over the subsequent years, World Down Syndrome Day gained traction which led to its official observation by the United Nations in 2012. Both the observed day and the week aim to raise awareness about Down Syndrome and celebrate those living with Down Syndrome in special and unique ways.

What is Down Syndrome?

March 21 is a significant day because people with Down Syndrome have a triplication of the 21st chromosome, giving meaning to the 3/21 date. While Down Syndrome exists throughout all cultures and regions of the world, there is no concrete reason as to why some people are born with this third (either part or whole) chromosome. Down Syndrome affects between 3,000 – 5,000 children born every year, resulting in a 1:1,000 ratio of births around the world, and impacts learning styles, physical characteristics, and overall health.

When those living with Down Syndrome have access to healthcare needs such as regular medical check-ups, physiotherapy, occupational therapy, speech therapy, counseling, or special education, their quality of life greatly improves. Alongside healthcare, community-based support as well as care and support from parental figures facilitate strong participation in everyday life and help break barriers around the world.

Influential People Around the World with Down Syndrome

Spread across a multitude of industries, there are influential people living with Down Syndrome that continue to help shape society – including speaking up and advocating for disability and educational awareness. From acting and modeling to athletes and musicians, explore a short list of famous activists living with Down Syndrome.

Chris Burke. Most well-known for his role as Charles “Corky” Thatcher in Life Goes On, actor Chris Burke has appeared in many TV shows and films, has been nominated for a Golden Globe, and continues to work for the National Down Syndrome Society. He is famous for stating, “It’s not about performing with disabilities. It’s about performing abilities. That’s the message,” on Oprah’s “Where Are They Now” episode.

Madeline Stuart. Famously known as the first-ever professional model with Down Syndrome, Madeline has been walking runways since 2015 starting at New York Fashion Week. She’s been featured at Fashion Weeks in Paris and London and many other highly regarded shows around the world, as well as being featured in Vogue and Forbes. Additionally, she started her own fashion line 21 Reasons Why and competed as a triathlete in the Special Olympics three times.

Zack Gottsagen. Life-long actor Zack Gottsagen is best-known for the film “The Peanut Butter Falcon”. He made history as the first-ever person with Down Syndrome to present at the Academy Awards for the Best Live Action Short film with co-star Shia LaBeouf.

Sujeet Desai. As a master of seven instruments including the clarinet, saxophone, piano, and drums, Sujeet has won a plethora of awards around the world including: the Achievement Award on United Nations International Day of Disabled Persons, the Thank You Award from Special Needs Families Developmental Center in Dubai, and the World Down Syndrome Day Award from Down Syndrome International.

Chelsea Werner. A four-time US National Gymnastics Championships winner at the Special Olympics, Chelsea proves there is nothing she can’t do. She has gone on to start modeling and has walked at New York Fashion Week and has been on the cover of Teen Vogue.

Other notable people with Down Syndrome include actor Pablo Pineda, fashion designer Isabella Springmuhl Tejada, athlete Tim Harris, award-winning actress Jamie Brewer, BAFTA-winner Paula Sage, chef Collette Divitto, and actor John Tucker.

Ways to Get Involved

There are numerous ways to get involved this year on March 21 to help raise awareness and celebrate all those living with Down Syndrome.

  • Become a World Down Syndrome Advocate. Join the global campaign to create awareness and fight for the rights and inclusion of all those with Down Syndrome. Become a member here: https://www.worlddownsyndromeday.org/world-down-syndrome-advocates
  •  Wear Lots of Socks! When chromosomes are pictured, they look like pairs of socks – and because those with Down Syndrome have the extra copy of chromosome 21, it looks like they have lots of socks. Help raise awareness by wearing lots of socks and post about it on social media using #LotsofSocks and #WDSD2022.
  • Host a fundraising coffee evening or bake sale to raise donations for the charity and awareness of World Down Syndrome Day
  • Get involved on social media by creating a Facebook fundraiser. More info can be found here: www.facebook.com/fund/DownrightSpecialNetwork