IN 2019, WE'RE SHAPING THE FUTURE
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We have undeniably come a long way in the past 35 years, when the Massachusetts Down Syndrome Congress was founded.
A generation ago, there was little expectation that people with Down syndrome should have the same opportunities as the rest of society. Segregation was the norm.
Today, our loved ones are integrated into their schools, communities, extracurricular activities and even places of employment. In many cases, individuals with Down syndrome are not only accepted, they are celebrated!
And I am proud to say that we at MDSC, with you behind us, have been instrumental in getting us to where we are today.
However, as much progress as our community has made, there's still so much more we want to do for our loved ones with Down syndrome:
- Every person deserves access to state of the art medical and clinical care to ensure they can lead a long healthy life;
- Students with Down syndrome need access to schools and classrooms that utilize best practices in inclusive education;
- Families and self-advocates need access to comprehensive resources and supports across the lifespan - from prenatal diagnosis to aging.
- Self-advocates need opportunities to build leadership and advocacy skills so they can have a strong voice in the community.
- Employment and community living opportunities are critical for everyone to lead a meaningful fulfilling life.
- And that's just the beginning.
As we always have, the MDSC and our community are not content to sit back and let the future simply play out. Instead, we fully intend to take control and steer the ship as we journey into the unknown.
That is why, in 2019, I am proud to share MDSC's new theme -- Shaping the Future!
With this theme in mind, we are committed to providing the best services now and for years to come so that we can be there for individuals with Down syndrome and their families throughout the lifespan.
Read on for more information about how we will carry this important theme throughout the year, and we can work together to Shape the Future!
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'SHAPING THE FUTURE' ANNUAL CONFERENCE
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Focus on research
Join us on March 23 for our 35th Annual "Shaping the Future" Conference. With a special research-based focus, we will delve deep into the promising developments in Down syndrome research and the exciting potential it has for the future.
With the help of the
National Down Syndrome Society
, our Presenting Sponsor, we will not only help make sense of what's to come in Down syndrome research, we will help families feel confident and empowered to navigate the research world in 2019 and beyond.
Our workshops will explore:
- innovative clinical trials
- studies underway nationwide that have promise to make a difference in people’s lives
- the latest research on
- sleep apnea
- nutrition and obesity
- behavior
- inclusive education
- clinical care
- Alzheimer’s disease
- information on the latest groundbreaking research into "silencing the extra chromosome."
- how to participate in Down syndrome-specific research studies on many of these topics, including through the National Institute for Health's DS Connect platform.
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Our Conference offers a general workshop track for parents, other family members, educators and professionals PLUS specialized programming for:
- Self-Advocates - for youth and adults with Down syndrome, ages 13 and up
- Brothers & Sisters - for siblings ages 8-16
We are excited to host hundreds of people from across New England and beyond at our 'Shaping the Future' Conference, and we hope you will join us to get the latest information from national and local experts while celebrating the lives of people with Down syndrome.
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More than just a conference
At the Awards Luncheon portion of our Annual Conference, we are proud to honor those individuals who have made a significant impact on the Down syndrome community. The MDSC presents five awards during the luncheon:
- Media Award
- Educator of the Year Award
- Leadership Awards
- Allen Crocker Award of Excellence
- Employer Award
Nominate someone you know
here
.
Plus:
- Annual Meeting
- Diversity Breakfast
"
Shaping the Future" Video
It has become MDSC tradition to unveil our official video on our theme --featuring your photos -- at our Annual Conference awards luncheon So send us your "Shaping the Future" photos that bring our theme to life.
Email your hi-resolution photo to
jkomyerov@mdsc.org
. If you want a chance at having your photo featured on Facebook as well, include your loved one's name, age (optional), hometown (optional) and a sentence on what their future holds.
Registration & Accommodations
A block of hotel rooms is being reserved for for out-of-state guests. Contact jsherman@mdsc.org for more information.
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PARENTS FIRST CALL PROGRAM
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Parents First Call is a bedrock program for the MDSC, providing new and expectant families with 24/7 support from our team of trained parent mentors for more than a decade.
PFC continues to grow in size and scope. We now have more than 60 volunteers across the state who are available to listen, share their journeys, answer questions, and provide valuable information.
Now, we have more offerings than ever to meet the particular needs of each of our members:
- A 4-7 Playgroup, just for parents of children with Down syndrome from 4 to 7 years old.
- A MDSC Cares Program that provides a care package for families whose child with Down syndrome is experiencing an extended hospital stay and/or ongoing complex medical care.
Meanwhile, we continue to offer a range of personalized supports that meet families "where they're at": a Single Mom's Social; a 'Family with Twins Social', baby massage and sign language classes; support groups for Spanish-speaking families and families of diverse backgrounds; New Family Socials; and Grandparents Get Togethers.
We continue to give special attention to our families with loved ones with special health care needs, including hosting a Complex Needs Support Group (with Children's Hospital Boston).
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SUPPORT GROUP LEADER RETREAT
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The MDSC is committed to ensuring that families and individuals with Down syndrome have the local supports and resources they need. We are grateful to the 27 Support Group and Play Group Leaders from across the state who gathered last weekend at our Burlington office for our 6th Annual Support Group Leader Retreat.
Together, they shared experiences and expertise and strategized about ways to strengthen the Down syndrome support groups across the state. Included in the retreat were the MDSC's two affiliates, the Down Syndrome Autism Connection (DSAC) and Dads Appreciating Down Syndrome.
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Congratulations to Jeff Roback (above), who was honored with our Support Group Leader of the Year Award. Jeff, who has led the MA chapter of Dads Appreciating Down Syndrome (DADS) the last 10 years, has been a dedicated leader and grown the group from a handful of dads to over 600!
Special thanks to our presenters - intuitive success coach Danielle Thompson and pianist Graham Campbell (right) for leading sessions.
All of our leaders work tirelessly to ensure that families are welcomed, supported, connected and have appropriate information and resources. Find out more about MDSC support groups below.
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With 35 years of experience as educational advocates for people with Down syndrome, we understand the challenges inherent in navigating the educational maze. We are adept at connecting schools with valuable resources and keeping up with the latest best practices in order to ensure that our loved ones get the best, most inclusive education possible.
Education Resource Parent Volunteer Program
Last year, we were thrilled to pilot our Resource Parent Volunteer Program to provide personal support to MDSC families seeking resources and guidance related to education, including fact sheets and webinar materials. Through the program, parents of children with Down syndrome are trained on best practices in education and peer-to-peer support.
In 2019, our Education Resource Parent Volunteer Program enters its first full year with a robust program in place. At the MDSC, we understand the importance of peer-to-peer support and the value of personal connections, especially for parents as they work to advocate on behalf of their child at school. If you would like to be connected to an education resource parent please contact us at education@mdsc.org.
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MDSC Education Webinars
We are dedicated to providing accurate information, resources and materials to help educators understand best practices for teaching students with Down syndrome in an inclusive classroom. To that end, we have held nearly a dozen webinars on a range of topics that may be useful for educators, administrators and parents alike. See some of our webinars here.
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Accept the Challenge Awareness Program
Accept the Challenge (ATC) is the MDSC's educational-based awareness program designed to promote understanding and acceptance of each other, regardless of differences and challenges. Building an inclusive community is an ever-evolving process that requires ongoing, honest, and supportive learning opportunities and conversations designed to highlight the fact that universally, we all have strengths, challenges, and differences.
ATC encourages individuals to take the perspective of others and develop skills to support all members of their school community. For more information or to book your school for an Accept the Challenge program, see below.
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Meaningful Inclusion Education Manual
The MDSC's self-published education manual, Meaningful Inclusion for Students with Down Syndrome - A Resource Guide for Elementary Educators continues to make waves in the Down syndrome and disability education space.
Available online and at MDSC events, the manual has sold over 2,600 copies since last year and has become an essential guide for special education teachers and parents here in Massachusetts and beyond.
Part I
Getting to know the Learning Profile of Students with Down Syndrome
Part II
Aiming High - Inclusion
Part III
Meaningful Curriculum
Part IV
Students with Down Syndrome and Other Complex Needs
Ask your school if they have their copy or order below.
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TEEN & ADULT SELF ADVOCATE PROGRAMS
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As part our Strategic Plan, we are committed to serving individuals with Down syndrome for their entire lives, including during the teen years and throughout adulthood. Our Self Advocate Programs will continue to be a critical part of our programming in 2019.
Adult Gathering
Our 2nd Adult Conference was a huge success last year, bringing together experts from around the country to engage in topics specifically geared to adults with Down syndrome and their families. This year, in lieu of a conference (which will return in 2020), we will hold an informal gathering in May. Some of our veteran families will have a chance to come together to re-connect and learn together. Stay tuned for more information.
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Self Advocate Advisory Council (SAAC)
In 2019, our Self Advocate Advisory Council, which gives self advocates with Down syndrome 22 and older opportunities to lead, network and socialize, will continue to represent the larger self advocate community while advising MDSC on issues important to all individuals with Down syndrome throughout the Commonwealth.
Already, last fall, SAAC members got together for their first quarterly social, organized a team for our Buddy Walk & Family Festival and sang the National Anthem at our Bruins Alumni charity hockey game. Coming up in 2019, their annual karaoke night is around the corner on Feb. 2, the 3rd edition of their SAAC newsletter will be published and they will plan and implement their quarterly socials.
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Advocates in Motion (AIM)
Our signature Advocates in Motion (AIM) Program for teens and young adults ages 13 to 22 has already had an incredibly busy 2018-2019 season with a ton of dancing (a kickoff dance, Halloween costume dance, and an upcoming Irish step dance session). Participants have also brainstormed what their future holds and parents will be discussing employment and how their children can find their passion. In 2019, AIM participants will develop leadership and self-advocacy skills, form meaningful relationships with peers, and build self-confidence in an encouraging environment.
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Statewide Advocacy
MDSC has made statewide advocacy a hallmark over the last 7 years, helping move legislation that is changing lives - the Down Syndrome Information Act, Real Lives Bill, National Background Check Bill, and the most recently passed Organ Transplant Bill.
Our Government Affairs Committee will gather to recommend and hash out a final official platform.
See our current platform here
, and see below for information about joining an MDSC committee.
The primary vehicle for advancing our policy priorities, our Annual Down Syndrome Advocacy Day, will be held again this spring at a date to be determined. The 6th Annual event will take place at the Massachusetts State House, where our community will connect with legislators, and share our personal stories and challenges. We look forward to hundreds of our members gathering at the Grand Staircase for a lunchtime reception and speeches before fanning out throughout the building to meet with legislators.
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National Advocacy
We'll also be sending a strong delegation to the National Down Syndrome Society's Buddy Walk on Washington on March 5-6, where we will work with leaders across the nation to advocate for national policies that will ensure that individuals with Down syndrome and their families don't lose access to critical benefits that are needed to lead inclusive fulfilling lives. There is no better time than now year to let our voices be heard on Capitol Hill. If you are interested in attending, please contact us at timetospeakout@mdsc.org.
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PUBLIC AWARENESS INITIATIVES
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MDSC's Board of Directors last year once again made raising public awareness about our community as our organization's top priority. Through our Buddy Walk Program and Your Next Star Employment Campaign, we raise awareness at events throughout the state, online and in traditional news outlets.
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Buddy Walk Program
Our Buddy Walk season in 2018 wrapped up strong with a very special guest at our signature Buddy Walk & Family Festival during Down Syndrome Awareness Month in October -- Megan Bomgaars of Born This Way on A&E.
In 2018, our Buddy Walk Program, featuring three walks around the state - Buddy Walk by the Sea in Hyannis, Buddy Walk & Harvest Fair in Westborough and Buddy Walk & Family Festival in Wakefield - raised more $500,000 to support our programs. And throughout the year, we shared Extraordinary Stories, like Megan's, with our community.
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Your Next Star
2018 was a banner year for our Your Next Star Employment Initiative, which outreaches to employers to help them understand the value that people with Down syndrome bring to the workplace.
When the Boston Bruins celebrated "Hockey is for Everyone" Night at TD Garden, they highlighted SAAC member John Dunleavy, who has been an indispensable member of the Bruins front office for the last 8 years. The Bruins interviewed John live in the control room and broadcast our video profile of John on the jumbotron during intermission.
With stories on Boston25 News, in the Boston Globe, and an appearance at the United Nations on World Down Syndrome Day, Your Next Star has also entered the public sphere. This year alone, our centerpiece video was viewed online more than 18,000 times. See our new
Your Next Star Impact Report
for complete information.
As we enter 2019, YNS continues to gain momentum. With generous funding from PricewaterhouseCooper, Liberty Mutual and Blue Hill Bank, and a partnership with Collettey's Cookies, MDSC will be launching a Job Preparedness Training Academy to prepare qualified candidates with Down syndrome and other disabilities for the competitive workforce. Stay tuned!
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ACHIEVING OUR STRATEGIC PLAN
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In 2019, our Management Team begins the final two years of our Board of Directors-approved
5-year Strategic Plan
,
an ambitious blueprint for expanding our resources, programs and advocacy for the future.
At the center of our 2016-2020 Strategic Plan is designing a program-and-services model that serves individuals and families across the lifespan; builds a community that fosters and sustains a sense of belonging; and increases capacity to ensure that the MDSC has a sustainable financial foundation for the future.
Building a new mdsc.org
Our program-and-services model will be achieved, in part, through the creation of a robust, accessible website with in-depth information on all topics related to Down syndrome. The MDSC Management Team is currently working with the MassGeneral Hospital Down Syndrome Program staff to develop some of the content for a comprehensive, easily-accessible repository of best practices, resources and information on all things Down syndrome.
Once completed, the clearinghouse of information will be searchable by topic, age range, or programmatic area that will call up the relevant, in-depth resources they are looking for. In addition, the new mdsc.org will bring the Parents First Call Program online, creating a new type of online support for new and expectant families to complement our First Call in-person 1-1 support program that connects new parents with experienced parents. The site will include two Centers of Excellence, one for Education and another for our First Call National Training Center.
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MDSC Events
From major events like our Annual Conference, Advocacy Day, Educators Forum and Buddy Walks to our more intimate gatherings like New Family Socials, Grandparents Support Groups, DADS Meetings and Full Life Ahead Transition workshops, we've got something for everyone. See our
Facebook events
for our full listing.
Get Involved
The MDSC has become one of the strongest Down syndrome organizations in the country because so many of our dedicated parents, professionals, self-advocates and others are involved in helping us to achieve our mission. You, too, can get involved in so many ways. It takes all of us working together to make the most impact possible.
Join a Committee
Consider joining one of our many Committees or Advisory Councils:
- Public Awareness Committee
- AIM Advisory Council
- First Call Advisory Council
- Medical & Scientific Advisory Council
- Buddy Walk Committee
- Hockey Game Committee
- Business Advisory Council
Go
here
for more information about each of these opportunities to become involved in a meaningful way to drive our mission and promote the acceptance and inclusion of all individuals with Down syndrome in Massachusetts and beyond.
Other Ways to Be an Active MDSCer
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YOUR 'SHAPING OUR FUTURE' PHOTOS
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Thank you for making the MDSC what it is today and working towards a brighter tomorrow. Without the energy and support you bring to the table, our organization and our loved ones would not have the bright future they now do.
That is why we are so excited about our "Shaping the Future" theme. We are eager to hear from you! Email us your "Shaping the Future" photos to jkomyerov@mdsc.org.
We look forward to an exciting journey with you in 2019 with more opportunities than ever before for all people with Down syndrome to lead inclusive, fulfilling lives in the community.
Sincerely,
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Maureen Gallagher, Executive Director
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