National Down Syndrome Campaign Features Boston Residents
The My Great Story campaign allows these individuals to share their story.
Evan Sneider is a movie star. He acted in an independent film entitled Girlfriend in 2009, and the film played at the Toronto Film Festival later that year. Sneider also has Down syndrome, but as he cheerfully explains in interviews, that hasn’t stopped him from following his dreams.
Sneider’s story is a part of the My Great Story campaign, which features nearly 600 stories and receives new submissions daily as a part of a national awareness campaign for the National Down Syndrome Society. The campaign, which allows individuals with Down syndrome to tell their inspirational stories, has received rave reviews. Recently, five Boston area individuals, including Sneider, told their stories as part of a special offshoot of the campaign, called the My Great Story Video Project, which is based on 10 of the most inspirational submitted stories from the collection.
“I did this project because I hope that people can be inspired by me to follow their dreams and passions,” Sneider says. “I have worked with amazing people, and being in Girlfriend was amazing. I hope to do more work on movies and on TV in the future, and I would like to do commercials and voiceovers, too. I told my story because I want people with disabilities to know that they can do what they love no matter what.”
Sneider was cast in Girlfriend by Justin Lerner, a UCLA film school graduate and one of Sneider’s friends from Wayland High School. Sneider had always dreamed of pursuing theater and working on TV, and grew up telling his mother that he knew he could try despite the challenges he might face. When he talks about his experiences at the Toronto Film Festival, where he met celebrities and participated in photo shoots, his face lights up. “Acting has always been my passion,” he says.
Angela Lombardo and her son, Isaiah, have also been heavily involved in the My Great Story Video Project. When Lombardo, the coordinator of Boston Children’s Hospital’s Down syndrome program, heard about the campaign, she decided to share a list of the 31 things that she celebrates about Isaiah, who has Down syndrome and is now 17. The 31 things represented the 31 days in October, which was National Down Syndrome Awareness month. Lombardo’s story was popular, and when she was selected to be part of the video project, she was excited.
“I thought it was great to show people that individuals with down syndrome don’t just become stereotypically happy and angel-like. Isaiah is a teenage boy— he’s goofy, he’s real, he’s emotional. Down syndrome is just a thing about him, he’s more than just that. He’s Isaiah. He helps out with the football team, he gets mad at his mother. He’s just a teenager,” she says. “It’s good for people to see that individuals with Down syndrome can be strong, functioning community members.”
Through Lombardo’s position at Boston Children’s Hospital, Isaiah has been able to learn advocacy skills. He helps people understand what life is like for teenagers with Down syndrome, while his mother works with families immediately after they have given birth to babies with Down syndrome, talking with them about resources and life expectations. “Life is different for different people with Down syndrome,” Lombardo says. “I think that’s why this project is wonderful.”
Source URL: http://www.bostonmagazine.com/health/blog/2013/07/29/national-down-syndrome-campaign-features-boston-residents/