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| ***** UpSide Weekly No. 35 ***** |
We just received the exciting news that there will be a ceremonial signing of two of the MDSC's priorities bills - the NBC Bill and Real Lives Bill - which Governor Patrick officially signed into law over the summer.
The National Background Check (NBC) Bill will require employees working with people with disabilities in positions that receive state funding to undergo federal criminal background checks in addition to the state checks that are already mandatory. The Real Lives Bill will streamline the funding mechanism for people with disabilities receiving state support and allow families greater control and flexibility over their supports.(Another major piece of legislation, the Autism Omnibus, which is also important to many of our families and friends, passed as well.)
The signing for these three bills will be at Fenway Park on October 23 at 12:45 p.m. If you can join us for this momentous occasion, please let us know at RSVP@mdsc.org. We'll share more details as they become available.
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Two dear friends of our community- Paul Epstein and Kyle Gendron - will be remembered at the Buddy Walk & Festival.
In May, 10-year-old Paul Epstein, who happened to have Down syndrome, passed away. His parents, Marc and Annette have been close to the MDSC and an inspiration to so many of us because of their persistent work to make a difference in the lives of others. Even when working on projects that helped others, their love and care for Paul was at the center of everything they did.
For 8 years, MDSC photographer Kyle Gendron captured the spirit and reality of the Down syndrome movement here in Massachusetts. He passed away in August after a long battle with colorectal cancer. He was 44. Kyle was an unsung hero of the Down syndrome movement in Massachusetts ever since his daughter, Mary Elizabeth, was born with Down syndrome in November 2004. In March, at our 2014 Annual Conference, we honored Kyle with the MDSC Media Award for his body of photographic work that helped spread the MDSC message of empowerment throughout the state.
During the walk at Lake Quannapowitt in Wakefield, Kyle and Paul will be remembered during the program with a special tribute.
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Community Fundraiser Spotlight
On September 26 at the Bradford Country Club, the Robertson family held its 1st Annual 'Brady Strong' Golf Classic, a community fundraiser launched by Brady's parents, Matt and Michelle Robertson. MDSC Executive Director Maureen Gallagher and self advocate Matthew Cullen spoke at the event, which was a great success. We look forward to many more.
Other Community Fundraisers
On September 4th, Danielle Thompson hosted a ladies night through SkinnySchool in Westford, which is donating a percentage of proceeds back to MDSC.
On September 15, Samantha's Harvest held its annual Charity Golf Open at the Renaissance Golf Club in Haverhill, with a portion of the proceeds supporting the MDSC.
On September 27th, Alicia and Sean Taylor, Buddy Walk team captains of Luke's Rough and Rowdy Crowd hosted their 2nd Annual Rodeo at the Tewksbury Elks. Among the attendees (pictured below) were MDSC Board Member Jeannette Angles and her son Ian, and past Board Chair Louise Borke, and her son Louis.
We can't say enough about the dedication and generosity of these individuals and organizations to support our mission.
If you would like to organize your own community fundraiser or want more information, contact Becca Canavan at communityfundraisers@mdsc.org
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Congratulations to the UMASS Memorial Children's Medical Center on the launch of their new Down syndrome clinic last month.
We were delighted to see so many of our families there from Central and Western MA. Special thanks to Senator Richard Moore, who worked with the state legislature to secure the funds. Thanks also to our good friends, Dr. Errol Mortimer, Russ Trottier, and Neal Lyons who were each instrumental in advocating for the clinic so local families could have access to up-to-date and coordinated care for their children with Down syndrome.
When it opens in January, we expect the center to be great benefit to families in Central Massachusetts.
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On September 8, the MDSC was proud to be back on the field at Fenway Park.
This time, it was all because of the generosity of a local company, EchoStor Technologies, and its leadership, Scott Trinque and John Dooley.
During the month of July, EchoStor donated $50 for every Red Sox hit to the MDSC! They did the same in other months for other organizations. Joining Scott on the field was his beautiful family: his wife Gail and kids Zoe and Theo (pictured above), who happens to have Down syndrome, and our Executive Director Maureen Gallagher and Communications Director Josh Komyerov.
In addition, EchoStor partnered with the New England Sports Network, which raised awareness by mentioning the promotion throughout the month during Sox broadcasts and on its Twitter feed!
Scott serves on the MDSC Business Advisory Council. "The MDSC has a special place in our hearts and we are grateful to be able to give back," Scott said.
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BE ENTERTAINED & INSPIRED AT
18TH BUDDY WALK & FAMILY FESTIVAL
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Our 18th Buddy Walk & Family Festival presented by Verizon is just around the corner, and we are thrilled to welcome you to Lake Quannapowitt in Wakefield on Sunday, Oct. 12. We are expecting a crowd of 4,000 people, including individuals with Down syndrome, their families, friends, teachers and other loved ones.
This year's walk is dubbed the "Walk for Champions." We have seen throughout the MDSC's 30 years that each of our families are Champions of the Down syndrome movement here in Massachusetts, enriching your homes, neighborhoods, schools and communities. Of course it's fun to be a champion, but it's also very hard work, and that's why you deserve to be celebrated!
For the occasion, we will provide a family-friendly atmosphere where you can connect with old friends and meet new ones. We will also have a stage program crammed that promises to inspire and entertain. We have three major talents making their Buddy Walk debuts - WBZ-TV anchor Jonathan Elias, who will emcee the event; singer-songwriter Alex Preston, a semi-finalist this spring on American Idol and a gifted multi-instrumentalist; and Flame, the New York-based band each of whom happens to have a disability.
We also have three acts with great histories at the MDSC Buddy Walk and who are back by popular demand - Nashville-based singer Ayla Brown, going on her 6th year; and Dave Skoletsky's GoTeam21, featuring incredible dogs like Yeager, the world-record holder for vertical jump. Not to mention the fabulous Mister Vic, who sets up shop on the grass with his amazing array of musical instruments for kids to explore and play.
This year, we will be celebrated landmark policy victories with the passage of the National Background Check Bill and Real Lives Bill, both of which promise to improve disability services and protections in Massachusetts forever! Together, we will be raising Down syndrome awareness and raising funds that are essential to support the MDSC's ever-growing array of programs and services that help us serve you and achieve our mission.
As was demonstrated once again recently at our 2nd Annual Buddy Walk & Family Festival Festival (see photos from that event here), nothing represents the spirit of our community more than our Buddy Walks. We are sure that the 18th Annual Buddy Walk & Family Festival will be one you don't want to miss!
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Down Syndrome Awareness Month
Wealth of Events in October and Beyond
As the state's premier resource for Down syndrome information, advocacy and networking, Happy Down Syndrome Awareness Month! Just as we do  throughout the year, we have a wealth of programs and activities in October to support individuals with Down syndrome, their families, teachers, medical providers and other community members.
Of course, Sunday, October 12, starting at 11 a.m., we will "Walk for Champions" at our 18th Annual Buddy Walk & Family Festival, our biggest awareness event of the year (See above). Funds raised support our critical programming including legislative advocacy, Parents First Call, Teen & Adult Programs, and educational initiatives. Just take a look at these other events in the month of October...
- October 7, 2014: Strengthening Your Voice on Your Child's IEP Team (Boston Workshop) 7-9 PM, Boston Public Library, Fields Corner Branch, 1520 Dorchester Ave, Dorchester. (See education article for details). Register at http://buff.ly/1vxoscf
- October 8, 2014: Understanding the Cognitive Profile & Expanding Vocabulary, part of 6-part Early Education Workshop, MDSC Office, 20 Burlington Mall Road, Burlington, $350 for series. See Education article for details and contact Julie Messina, Learning Program Director at jmessina@321foundation.org.
- October 18, 2014: Grandparents of Children with Down Syndrome Get Together, Norwood Public Library, 33 Walpole Street (Route 1A), Norwood, 10 -11 a.m. RSVP to Kathy Lapsley at dsgrandsnorwood@yahoo.com
- October 19, 2014: AIM: Let's Make a Plan (MAP) Advocates plan for the group's adventures for the year. Newton YMCA 276 Church St., Newton 12:30 - 3:30 p.m. For more information, contact Colleen at AIM@mdsc.org
- October 22, 2014: Grandparents of Children with Down Syndrome Get Together, Wilbraham Public Library, Crane Park (off Main Street), Wilbraham, MA, 7-8:30p.m. Sign up at dsgrandparents@gmail.com
- October 22, 2014: A Full Life Ahead Series - Creating a Home for your Loved One Massachusetts Families Organizing for Change in partnership with Massachusetts Down Syndrome Congress. The series focuses on transition, employment, housing, friendships and other topics. MDSC office, Lower Level Conference Room, 7-9 p.m. Sign up at snadworny@riversidecc.org.
- October 23, 2014: Strengthening Your Voice on Your Child's IEP Team (Western Mass. Workshop) 7-9 PM, Brightwood Branch Public Library, 359 Plainfield St., Springfield. (See education article for details). Register at http://buff.ly/YTUiD8
- October 24, 2014: Halloween Costume Dance for teens and adults sponsored by Emarc and the MDSC AIM program, $15, W.S. Parker Middle School, 45 Temple St, Reading, 7-10 p.m. Sign-up at AIM@mdsc.org.
- October 25, 2014 Families of Children with Down syndrome and Complex Needs with staff from MDSC and Children's Hospital Down Syndrome Program 10am - 12 pm. Boston Children's Hospital Waltham location, 9 Hope Avenue, Waltham. All family members welcome! Volunteers available for children's recreation and support. For more information contact Sarah at scullen@mdsc.org
We hope to see you on Oct. 12 at the #WalkForChampions and one or more of the above events. Thanks for your support and trust in the MDSC!
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Two New Productions Extend Outreach
YouTube Video & Network Commercial Spread Message of Empowerment
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WBZ and Jonathan Elias Present 18th Annual Buddy Walk & Family Festival
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What is a Champion?
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Equally important to the funds raised is the awareness created at our Buddy Walks. It's why we've bolstered our relationship with CBS Boston, expanding our partnership to include radio and television, including having WBZ-TV anchor Jonathan Elias emcee our Buddy Walk & Family Festival. Register here.
Our collaboration is already paying dividends in reaching a broader audience. Jonathan and a production team at WBZ worked with the MDSC to produce a commercial that is now in regular circulation on Channel 4 up until the Oct. 12 event. The ad features Jonathan with Anna, Jordan and Maya Tabasky, the three daughters of our Buddy Walk co-chairs Jon and Kerri Tabasky. Anna happens to have Down syndrome. (Read Jon and Anna's letter to MDSC members here.)
Raising awareness is also why we've continued a robust campaign to recruit celebrities to help us spread our message of empowerment. Kerri and Jonathan worked throughout the summer to record both famous people and everyday heroes on the subject of "What is a Champion?" The recently released spot features Elias, boxer George Forman III, Olympic gymnast Ali Raisman, Sox hurler Craig Breslow, Dr. Charles Steinberg of the Red Sox, former Celtic Dana Barros, Mayor Marty Walsh and WBZ-TV sportscaster Steve Burton.
We expect that all of these efforts will allow the MDSC and the Down syndrome community to reach an ever-expanding audience with our message of acceptance and inclusion. Check out both of these videos on our YouTube page. Be sure to give them a thumbs up and share with your friends and family!
And don't forget to come to our Buddy Walk to thank Jonathan, Kerri and many of the folks featured in the videos in person.
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Boston Bruins Partnerships
Players Needed for 10th Annual Grudge Match; Bruins Honor SAAC Member Dunleavy
10th Annual Grudge Match
The Bruins Alumni never seem to tire of defeating the MDSC All Stars. Having won last fall 13 - 9, they are back this year for the 10th Annual Hockey Benefit on Sunday, November 23 at the New England Sports Center in Marlborough.
Sign up now to join the MDSC All-Stars and you'll find yourself playing head-to-head against past Bruins greats like Ray Bourque, Terry O'Reilly, Bob Beers, Reggie Lemelin, Glen Featherstone, Kenny Hodge, Rick Middleton, Tom Songin, Bob Sweeney, and Andy Brickley. If you are the top fundraiser, you will even be able to play with the Bruins. The game is for ages 18+ with a few spots for 13-17 year olds. If you would like to play for the MDSC and support a wonderful cause, please contact Becca Canavan at hockey@mdsc.org.
Dunleavy Honored at Golf Tournament
The MDSC spent an evening in September with Bruins greats past and present, where our long term collaboration with the Boston Bruins Foundation was highlighted at their golf tournament. Our good friend, Bob Sweeney, spoke of the special relationship between our organizations. He recognized both Charlie Gadbois, our Past President and Hockey Game Chair, and John Dunleavy, a member of our Self-Advocate Advisory Council. John received an award for his work with the Bruins and the MDSC.
You too can spend time with our Bruins friends on November 23 at our Annual MDSC Hockey Game. You can purchase tickets here. Thank you to the Bruins for all they do to support our community!
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Bob Sweeney, John Dunleavy and Milan Lucic at the Bruins Foundation's Golf Tournament
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Education Manual - Meaningful Inclusion
The Ed Forum breakout sessions this year will mirror the content of our long-awaited education manual - Meaningful Inclusion for Students with Down Syndrome: A Resource Guide for Elementary Educators - which is about to go to publication.
We are accepting pre-orders at this time and anticipate copies being ready for mailing shortly. This guide provides a comprehensive look at the complex learning profile of students with Down syndrome, as well as providing information around best practices and educational considerations that are based upon research-proven best practices. To order your copy go to www.mdsc.kintera.org/edmanual
Regional Workshops
This fall, Education Director Mo Blazejewski has been holding regional workshops across the state on the topic of "Strengthening Your Voice on Your Child's IEP Team". The workshops, which are being held in five regions of Massachusetts are designed to encourage participants to network and connect with other families in their region as a way of building a local support network of families who have shared interests and experiences. Two workshops remain
Boston
Tuesday October 7, 2014 6:00-7:30 PM
Boston Public Library
Fields Corner Branch
1520 Dorchester Ave.
Dorchester, MA 02122
Western Mass.
Thursday October 23, 2014 6:00-7:30 PM
Brightwood Branch Public Library
359 Plainfield Street
Springfield, MA 01107
Early Education Workshops by MDSC & The Learning Program
The Learning Program Boston and The Massachusetts Down Syndrome Congress are collaborating on a hands-on, interactive Down Syndrome Early Educational Workshop series. The 6-part series is designed for parents and caregivers of children with Down syndrome between the ages of 3-5 who are just beginning to show an interest in letters and numbers. Each session builds on previous sessions
Wednesday, Oct 8 - Understanding the Cognitive Profile & Expanding Vocabulary
Wednesday, Nov 5 - Teaching Whole Words
Wednesday, Dec 3 - Effective Teaching Sessions
Wednesday, Mar 4 - Review of Match, Select, Name/Working with Your IEP Team
Wednesday, Apr 1 - Colors & Shapes
Wednesday, May 6 - Pre-Number Concepts
Details: 7:00-8:30 p.m, MDSC's office at 20 Burlington Mall Road, Burlington, Mass. Participants should plan to attend all 6 workshops for an optimal learning experience. $350 per family - participants will be provided with all the information, tools and materials they will need to follow-through at home in-between sessions (A limited number of financial scholarships will be made available) For more information and to register, please contact Julie Messina, Learning Program Director at jmessina@321foundation.org.
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Parents First Call
Program Celebrates Diversity, Schedules 2015 New Family Socials & Launches Spanish-Language Group
Cultural Diversity Potluck
Our Cultural Diversity Potluck Dinner last week was a huge success - with 50 people joining us! According to Sarah Cullen, the MDSC's Family Support Director, who organized the event along with Roxanne Hoke Chandler, there was an "amazing array of cultural food, music by Ricardo Coloma, lots of smiles, and lots of fun!" It was held at the Federation for Children with Special Needs. Thanks to all for making a special and fun occasion. For more information on this and other MDSC support groups, go to http://buff.ly/1xz0IXl
2015 New Family Socials
Mark your calendar for our next New Family Social here at the MDSC office conference room in Burlington on Saturday, November 1 at the usual time - 10 a.m. to Noon. Bring your whole family - grandparents too. And while you're at it, save these future dates for 2015!
Spanish Language Support Group
MDSC and the MA General Hospital Down Syndrome Program are co-hosting a quarterly Spanish-speaking support group for families with a younger child.
They are being held at the MGH Chelsea Medical Center which offers translation services. Ten parents and a few children attended this first meeting, and enjoyed getting to know each other! The group will be meeting on January 13, April 14, July 14 and October 20 from 12 - 1:30pm. We are very excited about this new collaboration and meeting the needs of more families.
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A few weeks ago, the MDSC received a phone call from a woman in Boston whose friend from Nigeria was living in a motel in El Paso, Texas, with an 8-week old baby girl with Down syndrome. During her pregnancy, the woman had complications and was granted a 6-month medical visa to deliver in the U.S. After the baby was diagnosed with Down syndrome, the mom (who does not want her name being used) had reservations about returning home, where she worried about insufficient medical care, a lack of supports and cultural attitudes that could prevent her Baby Sophia from reaching her potential.
Upon hearing the story, MDSC Family Support Direct Sarah Cullen set the wheels in motion to help the new mom. Sarah reached out to Roxanne Hoke-Chandler, who works at one of our partner organizations, the Federation for Children with Special Needs. Within hours, Roxanne connected the mom with two leaders with El Paso connections - the Diversity contact on the NDSC Board of Directors who used to live in El Paso and the president of the Down Syndrome Association of El Paso, who went to visit Baby Sophia and her mom the very next day at the motel.
A couple of weeks ago mom and baby journeyed by bus to Boston to relocate with a friend up here. Through phone calls, emails and social networks, the MDSC, the Federation, colleagues and friends cobbled together a crib, a car seat, clothes, diapers, and gift cards for the family. Roxanne spent the day with mom and Sophia at Children's Hospital ER and both Roxanne and Sarah visited when they were admitted. Roxanne brought her back to her friend's home upon discharge, and coordinated the pediatrician, early intervention services, and other supports.
Last weekend, the MDSC hosted our Potluck Dinner for Families from Diverse Cultural Backgrounds at the Federation, and Roxanne brought mom and Baby Sophia. They were welcomed by the other families attending, including an MDSC mom from Kenya, and two African-American First Call moms. Mom and Baby Sophia have found "a home away from home," says Sarah (pictured above with Sophia).
According to Sarah, the mom is overwhelmed with gratitude, and trying to take things one day at a time on her new path. The MDSC is grateful for the large community of support which mobilized so quickly and for our strong collaboration with Roxanne and the Federation! We look forward to having mom and Baby Sophia join us at the Buddy Walk and Family Festival!
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AIM Gets Ready for Buddy Walk & Other Adventures
This year's Keynote Speaker is Dr. Bill Henderson, the recently retired principal of the O'Hearn School in Dorchester, MA (which has been renamed the William W. Henderson Elementary Inclusion School). Dr. Henderson is a disability advocate and author, most recently, of "The Blind Advantage: How Going Blind Made me a Stronger Principal and how Including Children with Disabilities Made the School Better for Everyone." 
