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December 27, 2012 | No. 15
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The MDSC is about to be big in Japan!
Makiko is working on an article about non-invasive prenatal testing, which is about to be launched in Japan in 2013. She heard about the issue originally when our own Dr. Brian Skotko lectured in Japan earlier this year.
Maki, pictured above with MDSC Executive Director Maureen Gallagher and Family Support Director Sarah Cullen, was particularly interested in how the MDSC helped pass state legislation that ensures that all couples receiving a prenatal diagnosis have access to accurate up-to-date information about Down syndrome. She is hoping to bring some of our best practices back to Japan.
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New research, in the form of a history thesis project, will explore the impact of Dr. Allen Crocker as he worked with and helped countless families over decades as a clinician at Boston Children's Hospital. The researcher, a life-long member of the MDSC whose older brother is a member of the Self-Advocate Advisory Council, is looking to interview parents (and other family members) whose children were seen by Dr. Crocker at Children's Hospital. Of especial interest are families seen by Dr. Crocker before 1990. Interviews will be focused on participants' memories of Dr. Crocker, both his bedside manner and his interactions in his role as an MDSC Board member. The interviews will not concern treatment or any medical practices. Interviews will be 1-3 hours long at a location convenient to the subject. They will be recorded. If interested please contact Liza Brecher at lbreche2@jhu.edu or liza.brecher@gmail.com or by phone at 978-729-7351. This research project was approved by the MDSC Medical and Scientific Advisory Council. For other MDSC-approved research projects, visit our Researchers page. |
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. |
"Go Karen Gaffney!" It is a chant that she has heard countless times on her dozens of remarkable long-distance swims across various bodies of water, all to raise awareness about the abilities and obstacles facing people with Down syndrome.
Now, that collective chant has gone online, as Karen competes to become the World Open Water Swimming Association's Woman of the Year. Karen has moved up to 2nd place, with just 5 days left in the contest. She is just 1,000 votes behind the leader. Please consider everything she has done for the Down syndrome community, and let's get her across the finish line in First Place.
To support Karen's nomination 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. Use the power of your social networks and the power of her story to bring victory to Karen and the entire DS community.
It was three years ago this October that 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).
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The Massachusetts Developmental Disabilities Council (MDDC) has a unique opportunity for a free 9-week Self-Advocacy Leadership Series. Self-advocates can learn more about themselves, become better self-advocates, make new friends and share experiences with others.
The series is being offered to adults with developmental disabilities who live in the Metro area of Massachusetts. Classes will be held on Wednesdays, beginning on January 23, 2013 from 6:00 p.m. - 8:00 p.m. in Cambridge College, 1000 Massachusetts Avenue, Cambridge.
Each class focuses on a different aspect of leadership, increasing self-esteem and providing opportunities for students to meet new people and try something new. For complete information, including a brochure and application, go here. Application deadline Jan. 8. Space is limited.
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The MDSC's 2012 Media Award went to Target (represented by Shawn Kearney, right) for their inclusive modeling practices. Joining MDSC Board Chair Louise Borke (in green) and State Rep. Tom Sannicandro (center) is Ryan Langston and his family. Ryan was featured in a hugely popular Target advertisement last year.
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At our 29th Annual Conference in Worcester on March 23rd, 2013, MDSC members will have an opportunity to vote on new members to the MDSC Board of Directors. We are now seeking nominations for committed individuals ready and able to serve a 3-year term. The commitment of MDSC Board members has been the catalyst to the legacy of the MDSC over our 29 year history. Board members' are tasked with providing overall governance for the organization. Their responsibilities include development of policies, fundraising, financial oversight, and strategic planning.
All nominations are welcomed, though the MDSC is particularly looking for nominees who meet certain desired characteristics. Read more here.
Also at our Annual Conference, the MDSC will honor three individuals with our annual MDSC Awards. These include our Media Award for a person or company who exemplifies the MDSC's mission to disseminate up-to-date information about Down syndrome; an Outstanding Educator Award for an educator in Massachusetts who has significantly contributed to ensuring that students with Down syndrome are given every opportunity to maximize their full potential; and our Allen C. Crocker Award of Excellence, the highest award offered by the MDSC, for the person who most advances the Down syndrome movement.
Read more about these awards and link to nomination forms here.
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 Are you passionate about advocating for the interests of people with Down syndrome? Then why not take your message to the highest level, to those who make decisions with significant impact on the daily lives of those with Down syndrome? Join us for the Buddy WalkŪ on Washington on March 13-14th, 2013 as we make our presence felt in the nation's capitol. This two-day advocacy event brings together hundreds of people from the Down syndrome community around the country to meet with members of Congress and their staff on Capitol Hill to advance education, research, healthcare and employment opportunities. MDSC Executive Director Maureen Gallagher and the other members of our delegation meet directly with Bay State lawmakers serving us in Washington and/or their staff members. This is your chance to make a difference in the lives of people with Down syndrome and their families. If you are interested, please contact us at timetospeakout@mdsc.org. (Please note that the MDSC covers the cost of the registration fees and people pay for their own travel expenses.)
Read more about our national advocacy initiatives here.
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2012 Annual Conference Self-Advocate Grand Entrance
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On March 23 at the DCU Center in Worcester, the MDSC, for its 29th year, will hold its Annual Conference. Mark your calendars and plan to join us. Like last year and years before, it is bound to be equal parts educational and inspirational!
We have already confirmed many top-flight speakers, tackling topics you don't want to miss:
- Dr. Brian Skotko and Dr. Allie Schwartz, Clinical Co-Directors of the DS program at MGH - Healthcare for Children and Adolescents with DS.
- Dr. Emily Davidson, Director of the DS program at Boston Children's Hospital - Children with Complex Needs
- Dr. Brian Chicoine - Mental Wellness in Adults with DS
- Terri Couwenhoven - Friendships and Sexuality
- Peggy Coyne - Universal Design for Learning
- Kathleen Whitebread - Early Literacy
- Libby Kumin - Speech and Language
Stay tuned to the UpSide and our website for the latest information... Registration will open in late January! See more about our Annual Conference on our website. View the entire Awards Luncheon ceremony on our YouTube page here. Questions can be directed to conference@mdsc.org.
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MDSC Medical & Scientific Advisory Council Chair Dr. Brian Skotko has taken his expertise around the world this year, from Tokyo to Sao Paulo.
But most recently, Dr. Skotko took his (and the MDSC's) message of empowerment and information just south of the Mason-Dixon, to Knoxville, Tennessee. By all accounts, Dr. Skotko (and his colorful pants) got a warm Southern welcome, as you can see here (or above) in Part of I of this television interview with WBIR. See Part II here.
In the days before he entered the TV studio, Dr. Skotko, a clinician at the Massachusetts General Hospital's Down Syndrome Program, put on a workshop for East Tennessee health care providers on "Keeping Children & Adolescents with Down Syndrome Healthy." He also presented on "Celebrating Life with Down Syndrome" for the Down Syndrome Awareness Group of Tennessee.
Thanks for all you do for people with Down syndrome everywhere Dr. Skotko!
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 If you are between the ages of 11 and 18, are the brother or sister of someone with Down syndrome and would like an an opportunity to meet other siblings who just get what it's like, join us Feb. 10 from 11am-2pm at Town Line Bowling, 665 Broadway in Malden.  The date and time are changed, but everything else is the same... Free bowling, pizza and fun. The event and the group are being run by our Brother/Sister 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. |
One spot remains for Team MDSC's 2013 Boston Marathon Team.
Team MDSC and our community needs people ready take on the 117th running of the historic Marathon to support acceptance and inclusion of people with Down syndrome... people like you! Run because each step of your 26.2-mile journey will make a real difference.
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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There is nothing quite like our New Parent Socials that have quickly become an indispensable tradition/event at our Burlington office. Our latest was just two weeks ago, and like always, the families who came brought an energy to our space that is priceless.
Our "Socials" (or "Coffees" as we had been calling them) are open to all parents of children under three with Down syndrome. 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 are served. If you missed the latest one, no worries,.. We have another one coming up on Saturday February 9. Our office is located at 20 Burlington Mall Road, Burlington. Questions or RSVP to Sarah Cullen at scullen@mdsc.org or (781) 221-0024, ext. 206.
Meanwhile, enjoy these photos of the beautiful children and families who came earlier this month. The bottom photo is the whole gang: three little ones... Charlie, Anna and Alysson (left to right), and their moms, Anna Maciejuk, Heather Sexton and Mychelle Lee (our new Teen & Adult Program Facilitator). |
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