Happy New Year! 

 

As the New Year begins I want to take the time to share important updates about the Down syndrome community here in Massachusetts and beyond. Thanks to your support, the MDSC made a significant impact in the lives of people with Down syndrome and their families across the Commonwealth in 2013, and we have much more in store for the year ahead. We welcome you to join us in all our new and exciting initiatives in 2014! 

 

Thank you to everyone who responded to our 2013 Membership Survey, the first such undertaking in our 30-year history. The 450 responses were passionate and thoughtful and have provided us with a wealth of data to guide our planning and activities for the future. Here's what you told us:

 

 

Top Priority: Education 

According to the results, education is your top priority. That's why we're expanding topics for our Annual Conference as well as adding new educational programs such as webinars on education related topics, IEP clinics throughout the state and workshops in collaboration with the Learning Program Boston. Our new Education Director, Mo Blazejewski, has been working on all these initiatives and providing one-on-one support to parents. Plus, our comprehensive Educators Manual, which will cover best practices for educating students with Down syndrome is coming out this year. Look for it in our communications in late spring or summer.

 

Critical Need: Friendship and Social Networking

Before conducting the survey, we had realized that there was a gap in social programs for our self-advocate members after they leave high school. That's why we are making a concerted effort to expand social programs and opportunities for adults with Down syndrome. Last year our Self Advocate Advisory Council (SAAC) hosted a New Year's Bash for 60 self-advocates, our first-ever social event strictly for adult self-advocates. The survey results showed us that we were on the right track - you, too, desperately want to have more social opportunities available for your loved ones. This year, we plan to meet that need by expanding social and recreational resources available on our website, hosting quarterly get-togethers for adults, and continuing to improve the programming at our Annual Conference.  This spring, the leaders in our SAAC are organizing a full-blown self advocate fashion show in collaboration with our friends at Bentley University.

 

More Networking Opportunities

A third consensus that arose through our Membership Survey was the sense that there were limited networking opportunities for families within particular sub-groups. That's why we are bolstering activities for families with specific needs or backgrounds to connect with one another - whether at New Family Socials, through our new Complex Needs Support Group, at events for families of diverse backgrounds or at our new transition-related workshop series in collaboration with MFOFC. 

 

We also want to make it easier for all our local Down syndrome groups to work collaboratively among themselves and with the MDSC. After all, they are often best equipped to plan local activities for families within different regions of the state. To that end, later this month we are hosting a retreat for support group leaders that will create a forum for them to connect and share. We are committed to helping build strong networks to facilitate the ability of our families to find the resources they need and to learn from one another! 

To see a summary of the full results of our membership survey, go here. 

 

Advocacy

 

We recognize that systemic, large-scale change to benefit people with Down syndrome and their families must start in some respects on Beacon Hill and Capitol Hill. With your help, we'll continue to push hard on our Bay State legislators to pass key legislation, like the National Background Record Check Bill and Real Lives Bill. You can join us on May 27 at the State House for our very first Massachusetts Down Syndrome Advocacy Day, where you can connect with your local legislators and put these and other disability bills front and center in their minds. Stay tuned for more information.

 

On the national level, the ABLE Act continues to be a top priority, and it will be one of the first things we push for on February 26 and 27 during the NDSS Buddy WalkŪ on Washington. For two days, we will gather with hundreds of people from the Down syndrome community around the country to continue our tradition of advocacy at highest levels of government. We'll meet with members of Congress and their staffs to advance education, research, healthcare and employment opportunities.

 

Public Awareness

In 2013, we took our message of acceptance and inclusion for people with Down syndrome to a new level, for the first time in our 30-year history hosting three Buddy Walks across the state, and launching a celebrity ambassador program. This year, we are already planning for how we can reach even more people across the state, region and country with our message of empowerment.

 

Building on our work with an outside consultant last year, we are now beginning work on a major public awareness campaign. The campaign will use web-based storytelling to increase awareness of the MDSC's role as the state's leading organization for Down syndrome information, advocacy and networking. It will also tout our model of ensuring that new and expectant families receive accurate and balanced information about Down syndrome and that the general public be educated about what having Down syndrome really means. This will be a long-term project, but we look forward to getting started in earnest this year.

 

Access to Cutting Edge Research Opportunities

Our Medical & Scientific Advisory Council, formed last year, is leading the way to ensure that all our members have information about and access to the latest research opportunities. Made up of leaders in the medical and scientific fields, the MSAC immerses itself in the latest research in the field and selects a number of studies each year that will be made available for MDSC members to participate in if they so choose. Each research proposal received is carefully reviewed for content, ethics, and feasibility.

 

We understand that there are as many views about Down syndrome research as there are individuals with Down syndrome. But we want you to be able to choose if a particular research opportunity is right for your family.

 

Serving Families

The heart and soul of the MDSC continues to be doing whatever it takes to serve our existing members while connecting as early as possible with new members to provide critical support. Our Parents First Call program is going strong to meet the needs of new and expectant parents. Our other signature program, Advocates in Motion, continues to expand and strengthen, bringing together dozens of self advocates 14 to 22 monthly to network, share, and learn from expert guests. This year's AIM group will be exploring the ins and outs of what it means to "live healthy." 

Jeanne Lawrence, the UMass Medical School professor of cell and molecular biology who led a landmark study on Down syndrome will be speaking at our 30th Annual Conference on March 22.

 

In 2012, we showed the world what "Style Down Syndrome" really means. In 2013, we let the public know that people with Down syndrome not only deserve "Real Lives" but are living "Real Lives" in so many different ways.

 

Now, we want to introduce our theme for 2014. We've got the World Series Champion Boston Red Sox. We've got our resilience in the wake of the Boston Marathon tragedy. We've got the New England Patriots on their way to another Superbowl. And, we've got 5,000 people with Down syndrome and their families across the Commonwealth, each of whom are winners in their own right. And so, our theme for 2014....

 

WE ARE THE CHAMPIONS!

 

In the MDSC community, we are champions in infinite ways. We are champions of good public policy for people with Down syndrome, like the historic prenatal testing bill passed in 2012. We are champions in our cities and towns, educating our co-workers, our teachers and our neighbors. We are champions of allowing all people with Down syndrome to reach their true potential. 

 

In 2014, we will be weaving our Champion theme throughout our events, including at our Annual Conference in March and our three Buddy Walks - the Buddy Walk by the Sea (Sunday, July 27), Buddy Walk & Harvest Fair (Sunday, September 21) and our signature Buddy Walk & Family Festival (Sunday, October 12).

 

Team Wagoner - The Very Definition of Champions

 

For the 118th Boston Marathon, we have a team of champions training tirelessly day-in and day-out. Perhaps nobody embodies the "We are the Champion" ethic as much as Jim and Colby Wagoner. On April 21, the father-son duo will join nine other Team MDSC runners to take on the historic 26.2-mile course in support of the MDSC and our mission of promoting acceptance and inclusion.

 

Jim, an attorney in Fresno, California, is 47 years Colby's senior, and, at 155 lbs., he will be pushing well over twice his weight (when you factor in Colby's 80 lb. racing chair). For Jim, the Boston Marathon will be all about Colby. Colby has developmental disabilities, hypotonia, and autism, but Jim has recognized that during their races Colby forgets about his disabilities and becomes an avid competitor. "His elation during our races leaves no doubt in my mind that he genuinely enjoys the spirit and thrill of competition." Since Colby doesn't do well on planes, Jim and his wife Wendy will rent a motor home to make the trek east with their 11-year-old daughter. We look forward to welcoming them to Boston. 

 

We Need You to Bring our Theme to Life

As we enter our 30th year, we are committed to standing strong to ensure that our members have the support, the information and the connections you need for now and in the future.   

 

As always, we remain mindful of the reason for our success- you, our Champions. That's why we need you to help us bring to life the "We are the Champions" theme for 2014.

 

Share with us your photos and stories that show your loved one's championess. Please remember that we intend "We are the Champions" in the broadest possible sense. Photos of loved ones posing with trophies or involved in sporting events are wonderful. But so are photos of dancing, drawing, voting, singing, working, laughing... You name it!

 

Of course, as is our tradition, we will integrate your photos into our Annual Conference on March 22, 2014, where we'll bring together more than 500 self-advocates, parents, grandparents, siblings, educators, and other professionals to learn from regional and national experts on a spectrum of topics related to Down syndrome. 

 

So mark your calendars for March 22 and send us your photos. Be sure to include a sentence or two about what aspect of Champion-hood is depicted in the image. Email your photo to MyChampion@mdsc.org. Registration will open at the end of this month.