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December 12, 2012 | No. 14
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The MDSC and Boston Children's Hospital Down Syndrome Program have teamed up to host a new support group for Families of Children with Down Syndrome and Complex Needs. Is Down syndrome the least of your concerns with your child? Does your child use medical technology? Is it challenging to balance your child's multiple medical needs? If any of these scenarios sound familiar to you, join us on January 26 from 10 a.m. to 2 p.m. at the MDSC's Burlington office to learn how to best support your needs, network with other families, and share resources. The MDSC and the Boston Children's Hospital hosted our first such gathering in October. Meetings will continue quarterly. All family members are welcome. Parents will meet separately; kids/siblings will meet nearby. Volunteers are available for support during the meetings. For more information, RSVP to Sarah Cullen at (781) 221-0024, ext. 206 or scullen@mdsc.org. |
Tonight, Dads Appreciating Down Syndrome continues its new satellite outreach initiative with a meeting at Mick Morgan's Restaurant in Sharon (973 Providence Highway, Route 1) at 7 p.m. For the next several months the D.A.D.S. monthly meeting location will change in an effort to accommodate interested dads from various parts of the state. Look for us in Woburn about March through June. Suggested meeting locations may be made to Jeff Roback, dadsmass@yahoo.com. (Requirements include: free private room with Powerpoint compatibility, open menu and no minimum attendance. Please note the maximum occupancy for the room would be.) D.A.D.S. will hold its annual Holiday Party on Dec. 16from Noon to 3 p.m.at the Arc of Bristol County in Attleboro (141 Park Street). Pizza, face painting and a balloon artist will be available. Bring a wrapped gift that Santa can give to your child. RSVP K.C. Paul ASAP. |
If you're a parent of a child under 3 with Down syndrome, we invite you to join our regular New Parent Social on Friday, December 14 from 10am - 12 at our Burlington office.
Come meet other new parents: connect, learn, and share in an informal relaxed setting! Siblings, grandparents and other family members are also welcome. Light refreshments served. Please RSVP to Sarah Cullen at scullen@mdsc.org or by calling (781) 221-0024, ext. 206.
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There are just two spots left for Team MDSC's 2013 Boston Marathon Team.
Run the historic 117th marathon to support acceptance and inclusion for people with Down syndrome. Run for every time you have heard someone use the 'R' word. Run for every time you have been grateful for your loved one with Down syndrome because they've shown you what is really important in life. Run for every time you have wished that everyone else could see the beauty in them and their abilities. Run for every time you have seen your loved one struggle to reach a milestone yet NEVER give up and achieve their goal. Run because you can make 26.2 miles of a difference.
Team MDSC and our community needs people like you! Applications are being accepted through Friday Dec. 14.
For an application or to learn more contact Angela Ortiz, Development and Communications Director, at aortiz@mdsc.org. The MDSC is a proud partner of the John Hancock Non-Profit Charity Program.
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The Disability Law Center of Massachusetts has recently updated its comprehensive transition planning manual, Planning for Life After Special Education.
The 2nd edition includes substantial changes from the 2011 first edition, reflecting the rapidly developing area of educational law and policy. Additional information includes the following: Managing public benefits for transition age youth and young adults seeking employment; Developing appropriate transition services for students with severe developmental disabilities; Preparing for your student's college admission and success; Helping your student transition successfully into the adult work force and much more.
See the complete document here.
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As November turned to December, the MDSC, in collaboration with Down Syndrome Education International, held its first-ever Northeast Down Syndrome Education Conference, a two-day affair at the Burlington Marriott that welcomed more than 400 attendees from 25 states and 6 countries.
As the numbers themselves hint at, it was a tremendous success. Participants included regular and special education teachers who have students with Down syndrome, as well as school psychologists, speech and language pathologists, early intervention therapists, school administrators, and even health care professionals. Not to mention dozens of parents - inarguably the most important teachers any child has.
Those in attendance were treated to an unparalleled conference. For the last 30-plus years, the UK-based DSEI has been a singular force in the field of Down syndrome education, employing an evidence-based approach to inform their understanding of children's learning abilities and best practices for their education.
 
Over the two days, participants heard keynote addresses from DSEI founder, Chief Scientist and world-renowned expert Sue Buckley (pictured above in a panel discussion), self-advocate and A.I.M. member Brendan Durkin (above left), mom Anne-Lise Wang-Sperling (right) who relocated with her family, including her son Sebastian, to Massachusetts from Denmark last year, and DSEI Research Psychologist Kelly Burgoyne.
We were proud to be able to offer this opportunity to our members. Helping provide parents, educators and others with whatever tools they require to meet the individual learning needs of students with Down syndrome is part of the very fabric of who we are.
A big thanks to all of our guests, speakers, exhibitors, and the Marriott staff for making this Northeast Down Syndrome Education Conference so amazing and successful for everyone!   |
On November 18, the MDSC All Stars actually beat the Bruins Alumni, a team that included the likes of Rick Middleton, Bob Sweeney, Ken Hodge Jr., Bob Beers, Tom Songin and broadcaster Andy Brickley Jr, among others.
As the MetroWest Daily News wrote about the 12-11 final score, "the Bruins alumni players aren't used to losing, especially in a nail-biting overtime finish, [but] Sunday's loss to the Massachusetts Down Syndrome Congress was still a victory in the end for everyone involved." Congratulations to the All Stars and thanks to the Bruins Alumni for playing for a truly great cause! This 8th Annual grudge match was the best one yet. Fans were treated to what's become an annual tradition, a growing group of A.I.M. members and other self-advocates singing the National Anthem. Blades the Bear and Finz the Shark entertained everyone during the Free Skate. And dozens of folks got steals from our silent auction, which included an all-day fishing expedition between Hyannis and Martha's Vineyard, Celtics tickets in Section 1 of the Garden, a free room at the Danvers DoubleTree with passes for CoCo Key Water Resort, tickets to the Boston Ballet's production of Sleeping Beauty, and much more. We are grateful for the commitment of all the players on both sides of the ice. O nce again, the Bruins Alum demonstrated as individuals and as a group and how much they truly care about the Down syndrome community. The MDSC All-Stars biggest fundraiser was Joey Campagna, who raised over $7,000 in honor of his brother Danny, a self-advocate (the brothers are pictured below). Joey was 11 years old when he first played for the MDSC All-Stars!
Dave Kelleher (pictured below with event founder Charlie Gadbois) received the Helping Hand Award for his significant contributions to the MDSC hockey game over the years. Samantha Marcia Stevens of Marlborough dropped the puck to kick off the game (photo below and see the video here).
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   We are thrilled to welcome the newest members of the Massachusetts Legislature. We at the MDSC look forward to working with them on our initiatives to advance good policy for people with Down syndrome and the entire disability community. See our Statewide Platform here. New State Senators (pictured above left to right)
Kathleen Ives - 1st Essex
Joan Lovely - 2nd Essex Michael Barrett - 3rd Middlesex New State Representatives Brian Mannal - 2nd Barnstable Paul Heroux - 2nd Bristol Alan Silva - 7th Bristol Leonard Mirra - 2nd Essex Diana DiZoglio - 14th Essex Frank Moran - 17th Essex Aaron Vega - 5th Hampden Danielle Gregorie - 4th Middlesex Kenneth Gordon - 21st Middlesex David Rogers - 24th Middlesex Marjorie Decker - 25th Middlesex Jeffery Roy - 10th Norfolk Josh Cutler - 6th Plymouth Claire Cronin - 11th Plymouth Jonathan Zlotnik - 2nd Worchester Mary Keefe - 15th Worchester |
 The MDSC has high hopes for a bill that for years has been getting bogged down in the legislative process on Beacon Hill. The National Background Check Bill, one of our priority pieces of legislation, would require employees who will be working directly with people with disabilities to undergo a federal background check (currently only a state check is required).
In January, the bill will need to be re-filed for the next two-year legislative session. The MDSC has taken the re-filing as an opportunity to give the bill a fresh look, reconsidering bill language and our overall strategy. The renewed energy seems to be paying off. Last month, we convened key stakeholders from a variety of state agencies - Department of Public Safety (DPS), Department of Developmental Services (DDS), Executive Office on Health and Human Services (EOHHS), Disabled Persons Protection Commission (DPPC), Developmental Disabilities Council (MDDC), The Arc of Massachusetts, and the Disability Law Center (DLC).
We are pleased to announce that when it is re-filed, it will have additional bill sponsors, and a larger, more cohesive and reinvigorated coalition of backers that will be working hard to get it across the finish line. Stay tuned to the MDSC for action steps you can take on this and other priority bills that help people with Down syndrome.
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  Last Tuesday, despite the support of three-hundred disability organizations, including the MDSC and 20 veterans' organizations, the U.S. Senate voted down the United Nations Convention on the Rights of Persons with Disabilities. Former Senate majority leader and disabled WWII veteran Bob Dole (left) silently beseeched lawmakers from his wheelchair to pass it. Our own Sen. John Kerry (right) explained that the treaty would in no way impact U.S. law but merely encourage other countries to adopt our own standards and make life easier for disabled Americans abroad. Modeled on the landmark Americans With Disabilities Act, the treaty is signed by 154 countries and ratified by 126. Similar to the ADA, the principles of the CRPD include equality, non-discrimination, inclusion in society, accessibility, and respect for inherent dignity. It is also consistent with the Individuals with Disabilities Education Act (IDEA), the Rehabilitation Act of 1973, and numerous other U.S. laws. Despite all this, ratification fell short in the Senate by 5 votes. The treaty now awaits the Next Congress. The MDSC is active in disability policy on the state, national and international level. See our Policymakers & Advocates page here for complete information. |
 Are you a brother or sister of someone with Down syndrome? Are you between the ages of 11 and 18? Are you looking for an opportunity to meet other siblings who just get what it's like? If you answered yes to these three questions, join us on Sunday, Jan. 27, 2013 from 11am-2pm at Town Line Bowling, 665 Broadway in Malden for free bowling, pizza and fun.  The event and the group are being run by our Brother/Sister LEAD Facilitator Sam Stark, sister of Chris Stark, a self-advocate and member of our Advocates in Motion program. (Chris and Sam are pictured above.)
As Sam said about her experience last year running the sibling track of our Annual Conference, "I feel so lucky to have been given the opportunity to connect more siblings through the MDSC. It is an opportunity for brothers and sisters to meet others, to express themselves and to learn valuable information." Questions and RSVP to Sam Stark at brothersister@mdsc.org or call 781-221-0024. Read more about Sam here and more about our Brothers & Sister program here. |
 The A.I.M. Teen and Young Adult Program celebrated its 5th Annual Holiday Party this past Saturday at the Wellesley Community Center in Wellesley. Over 75 teens and young adults gathered for what was the most festive and enjoyable holiday party to date! Thirty-two students from Newton ASC, an organization that helps connect time-crunched Newton students with local volunteer opportunities, assisted with the event. DJ Dan'O rocked the venue with music (Gangnam Style was played at least twice!), disco lights, and dance moves! In the spirit of giving, AIM participants brought donated gifts and food items that will go to Toys for Tots and a shelter near the MDSC offices in Burlington, Mass. Thank you to everyone who made it out to celebrate with AIM this holiday season and to all those who celebrated from afar; we wish you and your family a happy and healthy year ahead! A.I.M.'s Teen & Young Adult Program is open to self-advocates with Down syndrome from 13 to 22. If you are interested, visit here or contact Colleen Endres at cendres@mdsc.org.  |
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Our good friend, self-advocate Karen Gaffney, has been nominated (and is in serious contention) for the World Open Water Swimming Association's Woman of the Year aware. She is currently running in third place with nearly 20 percent of the vote, so your vote (and your sharing on Facebook or Twitter) can push her to the top!
Three years ago this October, Karen, then 31, swam 5 miles across Boston Harbor, dodging lobster trap buoys and cutting through three foot swells to raise awareness for Down syndrome. As an onlooker, John Forgione, told WCVB-TV at the time, "I'm so impressed with this young lady. She made me aware, well aware, of how people with disabilities can accomplish a real lot of good things." Read the Boston Globe's coverage here (which includes a great video).
Since then, Karen has continued her remarkable feats for good causes, including an 8.5-mile swim across Lake Champlain for the North County (NY) Down Syndrome Association in 2010, a 6-mile swim down the Columbia River, raising $80,000 for the Aquatic Therapy Program at the Providence Center for Medically Fragile Children, 2011, a 7-mile swim from Molokini to Wailea Beach on Maui for Best Buddies of Hawaii that same year and in 2012, she again swam across Lake Champlain and was inducted into Portland, Oregon's CYO Hall of Fame.
To support Karen's nomination for World Open Water Swimming Woman of the Year, go to this link. Scroll down to Karen's name on the left, check the circle by her name, then scroll further down to click the vote button.
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