How many babies with Down syndrome are born in the U.S. annually? According to Dr. Brian Skotko, Board-certified medical geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital, new research suggests that conventional wisdom of Down syndrome prevalence numbers has indeed changed. Skotko explains more in the latest DSAIA Live! podcast.
The new data shows in 2011, there were 1 in 800 live births of babies with Down syndrome, which is about 5,000 babies with Down syndrome born annually. The research also calculated the reduction rate for that year at 32%, which means that an estimated 3,300 were not born due to elective terminations. A fact sheet containing all of the newly compiled data is available for download online.
Dr. Skotko explains in the podcast that because these new numbers area a change from previous prevalence data, DSAs around the country should update their fact sheets and awareness materials. "We all need to be using the same numbers," says Dr. Skotko.
To listen to the full interview with Dr. Skotko, go to the DSAIA Live! podcast page.
From visionary ideas to practical management tips, Down syndrome organization leaders know that no other conference comes close to providing the useful tools and knowledge that the annual DSAIA Leadership Conference offers. As a speaker at the annual event, you can be an integral part of bringing top-level training and networking opportunities to DSA leaders from across the nation.
Attendees come from large and small organizations, veteran and start ups. That's why it is so important to offer a variety of topics and learning levels. It's also why we carefully vet our speakers/presentations to make sure that the program is the best it can be, improving each year and bringing something for each type of attendee.
Learn more about what topics our members value and the process itself by clicking here. Submissions are being accepted until the program is complete but all speakers will be notified by October 1, 2017, regardless of the status of the program.
(Full podcast interview available here.)
Katie Mann and Annie Klark were on a mission: to break down the “4th Wall” of the theater to give access to individuals with disabilities. Meeting through the theater, their backgrounds (Klark’s in theater and Mann’s in special education) were just the right mix to create something incredible for the disability community all over the state of Michigan with 4th Wall Kids.
And it all started with the Down Syndrome Guild of Southeast Michigan (DSGSEMI). The DSGSEMI was 4th Wall’s first client. Mann said that Paulette Duggins (DSGSEMI’s Executive Director) was willing to take that leap with them. "The program (and Katie and Annie) are amazing!" said Duggins. "What I find incredible is that this type of program allows each individual to showcase their uniqueness, their skills, letting them do what they are competent, confident and comfortable with."
When Mann and Klark saw individuals with disabilities come through their program, they immediately saw the need to create something more expansive in order for the larger population to attain access to theater.
With no money to buy a theater, they opted instead to create a “mobile theater”, traveling to locations to hold their workshops. Little did they know how popular their “alternate” idea was. In 10 months, they had reached their 5-year goal. Currently serving 104 organizations throughout the state of Michigan, they offer singing, acting, and dancing in each workshop as well as American Sign Language and modified movement. While they will write their own shows, they also have pre-written shows available for organizations.
From one-hour workshops up to a 12-week program, organizations can start slow and progress to a larger and more involved program. And with their new company, 4th Wall Backstage, they are expanding internationally with pre-packaged workshop materials.
A natural choice for building self-esteem and self-advocacy skills, Mann said that they saw this type of opportunity from the beginning. “We had seen [with the students in their home theater] the amount of growth they had experienced through the theater and how affirming it was and how empowering it was.” The pair also saw the benefits in terms of life skills such as maintaining eye contact and working together as a team to name a few. Klark said that they watch their performers’ confidence soar throughout the completion of a program.
DSGSEMI's theater workshops were part of their "Our Rockin' Teens/Adults" program, which was recognized with an DSAIA Affiliates in Excellence Award earlier this year.
DSAIA is partnering with 4th Wall Backstage to offer members a 20% discount off the pre-packaged resources. To learn more, visit our Discount Partner Page.
Massachusetts Down Syndrome Congress (MDSC) has built an employment initiative that engages employers and opens doors for good, meaningful jobs for the self-advocate members in their community. "Your Next Star" was launched two years ago and is a clarion call for employers to diversify their workforces by including people with Down syndrome and other disabilities.
"We're talking about the positive benefits that people with Down syndrome bring to an organization," said MDSC Communications Director Josh Komyerov. "They add to the organizational health of the employer. The organizational health of leadership, client satisfaction, motivation - all those things are huge benefits to hiring people with disabilities."
Employers are learning about these benefits through the "Your Next Star" awareness campaign. This comprehensive outreach initiative, which includes a website, forums and community partnerships, educates organizations and create buzz among the employment community about the importance of disability diversity. Komyerov explains: "Your Next Star is not job matching. We target employers directly - that's where it's unique. We're telling employers that Your Next Star could be someone with Down syndrome."
Before the campaign started, MDSC identified a interesting trend: The level of education reached by adults with Down syndrome did not really match the quality of jobs they were being offered. In response, MDSC partnered with a government employment agency and set out to show employers first hand the full and diverse view of their potential workforce and the benefits of hiring a person with Down syndrome.
Executive Director Maureen Gallagher with Komyerov are co-presenting a session at the DSAIA Leadership Conference in Cincinnati Feb 23-26 to further explore with DSA leaders the benefits of a diverse workforce, innovative approaches to hiring people with disabilities, and examples of successful employers and approaches that lead to success.
For more information on Your Next Star, visit www.yournextstar.org.
Oscar winners and sports legends teamed up with self-advocates in November to promote Down syndrome awareness and acceptance at Global Down Syndrome Foundation's annual Be Beautiful Be Yourself Fashion Show. Queen Latifah and Jamie Foxx were joined by Hilary Swank, Matt Dillon, John C. McGinley, Amanda Booth, and Peyton Manning at this incredible event on Nov. 21 that raised over $2.1 million for critically needed funds for research.
Deanna Tharpe, DSAIA Executive Director and Mac Macsovits, DSAIA Board President at the Be Beautiful Be Yourself Fashion Show
The event is the single largest fundraiser benefiting individuals with Down syndrome. Proceeds help fund over 30 labs and 100 researchers at the Anshutz Medical Campus the University of Colorado-Boulder, as well as the Sie Center for Down syndrome at Children's Hospital Colorado.
Michelle Sie Whitten, Global Down Syndrome Foundation co-founder and president/CEO, imparted these thoughts for the future: "I'll know my work is done when parents like me can close our eyes and leave this world without fear - knowing that our children will be accepted, independent members of society."
Michelle's daughter, Sophia, is the inspiration for GDSF and its remarkable body of work.
For more information on the event or the foundation's work, visit www.globaldownsyndrome.org.
Why is the Every Student Succeeds Act (ESSA) so important for students with disabilities? What is the connection between ESSA to IDEA implementation? And how does it affect your child's IEP? Plus...how can you as part of the Down syndrome community effectively advocate at your state level when it comes to ESSA?
As part of a joint collaboration between Down Syndrome Affiliates in Action, the National Down Syndrome Congress and the National Down Syndrome Society, there will be a three-part webinar series on the Every Student Succeeds Act (ESSA), which will be presented live on three consecutive Thursdays in January at 8-9pm Eastern Time. The first webinar in the series will occur on January 12, 2017.
The presenters will be NDSC Senior Education Policy Advisor, Ricki Sabia, and NDSS VP of Advocacy & Public Policy, Heather Sachs. The two subsequent webinars will get into much greater detail about how to use ESSA with IDEA to support high expectations at your child's IEP meeting and how to advocate in your state for strong ESSA implementation.
Register today by clicking here. And feel free to share this learning opportunity with other Down syndrome community leaders and parents!
You can win a gift basket of holiday cheer. And it's so easy. Submit a speaker to our directory, and you will be added to a drawing for one of three Harry & David holiday gift baskets.
We are accepting recommendations for both internal development (for your board/staff) and external information (parents/educators/physicians). More categories will be added as speakers are added. Enter in three simple steps:
At DSAIA, we know that providing your families and other stakeholders with quality speakers at your local events, workshops and conferences is important to you. Retaining speakers can be costly, and that is why it is so important to learn from other members about their experiences with speakers.
Here's another way you can contribute to the success of the speaker directory. If you see a speaker in the directory that you have personally had present for your organization, please submit a review in the box below their information.
And the numbers proved it. DSAW's Awareness walk saw an increase of 600 more participants and a 30% increase in fundraising revenue.
20 years of walks also means a lot of trial and error. So Dawn provided some humble advice for other DSA Awareness Walks:
1. Keep it simple and small, especially in the beginning.
2. Couple your walk with a natural destination or family attraction to draw in more attendees (DSAW holds their walk at the local zoo.)
3. It's not going to be perfect. Even after 20 years, we're still figuring things out. We always will find things to improve or do differently.
4. Have fun with it. Don't take yourself so seriously. You're going to improve every year. Focus on the families coming together. The attendees don't see the little things that go wrong. It's the intention and enthusiasm they go home with.
5. Fundraising is important, but the tangible return is the relationships. Generating enthusiasm for our mission to then interest people in philanthropy.
6. Launch your site early - at least four months before your walk to give people time to procrastinate.
7. Find different ways and different times to tell your story throughout the year - not just during Walk season. This way the Walk isn't about awareness of your organization, it's all about people with Down syndrome.
8. Have a really cool t-shirt with fun graphics and colors, where sponsors will want to see their logos, that people will want to wear all the time.
Story by Lindsay Radford
The Johnny Stallings Recreation Program, which just wrapped up its first year, provides activities and tutoring between 2:30-6:00 on weekday afternoons for anyone between the ages of five through adulthood.
“The adult programs in our community wrap up at 2:00 pm. Some people can go back to their homes, but others faced the same problem our students did,” said Crites. “It wasn’t safe for them to be home alone. That’s when we decided to open the program up to adults, too.”
This ambitious project didn’t happen overnight. It took three years of planning, from buying a building from a local school district, to renovating it, to becoming a licensed child care facility, to laying out the curriculum. The association paid $60,000 for the school building, plus another $130,000 for renovation work.
“We had a lot of help getting it going. There were ups and downs and I shed a lot of tears over it, but it’s a huge benefit for the community,” said Crites. “I’m hoping other organizations would like to see what we offer and say, wow, we can do that. I’m happy to share the plans!”
The center spans 7,300 square feet, includes a recreation room for the teenagers and adults, complete with a pool table, play station, air hockey tables and more. “We wanted to make sure the kids feel like they are teenagers and they are treated that way,” Crites said. “It’s like a club where they can hang out.”
In addition, there is an enrichment room, where the center hosts its cooking, dancing, art and exercise classes throughout the week, providing additional educational opportunities for the students. The perks don’t end there. The center also has a homework room, where students can work with a certified special education teacher.
The cost to parents is $35 per week for the first child, then $20 per week for the second child and $15 for any child after that.
Crites says the success of the program is reflected in the stories she hears from parents:
“We had a young man with Down syndrome, Isaiah, who really struggled with communicating his feelings. For the first three or four weeks he came to the center, he would throw his backpack down and lay on the couch. He wouldn’t participate in the projects, so we’d bring them to him on the couch. He was intimidated to be around all the kids. Then things began to change. His mom told me she had never seen her son so interactive at home. Now he actually hangs out with his siblings and enjoys being social. She said that change was all due to his time at the center.”
How can teams fundraise for your local Awareness/Fundraising Walk? Let us count the ways. Team fundraising doesn't have to feel like a chore or a burden - it can be a lot of fun. Here are 85 creative ways your Awareness/Fundraising Walk teams can boost their dollars raised. It's divided into sections 1. Involve the Community, 2. Host an Event, 3. Boost Outreach, 4. Use your Talents.
I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio
Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. Learn More
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