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***** UpSide Weekly No. 41*****
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11th Educators Forum Nov 18 to Explore Creating Inclusivity 

The MDSC 11th Annual Educator's Forum for Supporting Students with Intellectual and Developmental Disabilities will be on the theme: "We Are All in This Together - Collaborating to Create Inclusive Schools"


The event, which will take place Wednesday, November 18, on the campus of Holy Cross College in Worcester, will feature workshop topics designed to provide teachers with tools and ideas to facilitate collaboration and planning for students with Intellectual and Developmental Disabilities. 

The in-the-trenches perspective of our workshop presenters will highlight the goals, challenges and solutions to ongoing issues facing education professionals as they work with families to provide meaningful inclusive educational opportunities for students in all educational settings. 

 

Discussion will focus on the unique issues related to inclusion programming in schools where standards-based student achievement and accountability play such a big role in our daily instruction. 

Please Save the Date of November 18 and feel free to contact the MDSC at [email protected] or 781-221-0024 for more information!

Parents First Call Program 

New Staff to Support Families of Children with Special Health Care Needs 


Jeanne Doherty has joined the
MDSC staff as our Family Support Program Specialist. 

 

Jeanne will be working closely with families whose children have Down syndrome and other special health care needs.  She will provide helpful resources and support to families whose children are preparing for surgery, undergoing leukemia treatment, who have been diagnosed with Down syndrome and co-occurring autism, or who have other special needs.  Jeanne will work closely with Sarah Cullen, our Family Support Director, to offer specialized supports and connections for families.

 

The MDSC and Boston Children's Hospital will continue to co-host our Complex Needs Support Group, which is open to all families experiencing special health care needs and concerns.  The group meets quarterly in Waltham, and will be scheduling a September meeting soon.


Jeanne comes to the MDSC as the co-chair of the
Down Syndrome Autism Connection, an MDSC affiliate. She is also the mother of three girls, including Jessica, who has Down syndrome and autism. 

 

We are thrilled to welcome her to the team! 

 

New Family Social on Saturday

Families of children with Down syndrome three years old and younger, as well as expectant families, are warmly invited to join our next New Family Social this Saturday, August 8 from 10 a.m. to Noon at our office building in Burlington. 


Come meet other families and learn more about MDSC and helpful resources at this 
informal get-together with light refreshments! Siblings and Grandparents are invited as well!

 

WHERE: MDSC, 20 Burlington Mall Road, Burlington, MA (01803) Lower Level Conference Room. RSVP to Sarah Cullen, [email protected] or by calling (781) 221-0024 x206 

 

Out-of-State First Call Trainings

MDSC Family Support Director Sarah Cullen recently conducted two more trainings for programs trying to start of expand their own First Call Programs. 

 

Sarah shared her expertise in building and growing the model Massachusetts-based First Call Program with the Piedmont Down Syndrome Support Network and the Triangle Down Syndrome Network, both in North Carolina, as well as the Down Syndrome Association of Wisconsin. 

 

In total now, Sarah has traveled to conduct 15 trainings in 13 states sharing our model program with others to bolster their services. 

Advocates in Motion 
A.I.M. Gathers Steam for Upcoming Year

 

Buddy Walk Team

Join the Advocates in Motion's "AIM High for the Sky" Buddy Walk team, which will participate in our Buddy Walk & Family Festival on Oct. 11 in Wakefield. Any family with a child between 13-22 - whether you have been involved in AIM yet or not - can join the AIM High for the Sky. Go here to join. 

 

Employment will be 2015-16 Theme 

Next year's theme for our Advocates in Motion is decided: Employment! The MDSC is committed to helping individuals with Down syndrome throughout the lifespan to have opportunities to reach their full potential. Employment - which is also the focus of the Your Next Star public awareness campaign that the MDSC is readying to launch - is central to that goal. The AIM curriculum around the Employment theme is being developed. 

  

The Massachusetts Down Syndrome Congress' AIM: Teen and Young Adult Program is for youth ages 13 to 22 and their families. They get together during the school year to have fun, meet peers, and learn new things! For more information, contact us at [email protected].

MDSC's First Conference for Adult Self Advocates Oct. 24

 

On October 24, the MDSC will hold its very first adult conference in collaboration with the Massachusetts General Hospital Down Syndrome Program on October 24th.   


Titled "Growing up with Down Syndrome: Living a Longer, Healthier and Meaningful Life," the conference is specifically geared for
 adults with Down syndrome ages 22 and up, their family members and other supporters


The day will focus on empowering adults with Down syndrome ages 22 and up along with their families and support network to plan for a healthy and meaningful future. 


Stay tuned for registration which will open in late summer!

5th Buddy Walk by the Sea

Nearly 400 Gather on Cape at First Buddy Walk of Season

It was a magical start to our Buddy Walk season on July 26 at our 5th Buddy Walk by the Sea. 

 

About 360 people with Down syndrome, parents, siblings, grandparents, aunts, uncles, cousins, friends, teachers, co-workers, and neighbors came together at Falmouth Marine Park to support our loved ones with Down syndrome. 

 

Special guests included Self Advocate Ambassadors Carey Daly and Cynthia Goldberg; and legislators Congressman Bill Keating, Senator Vinny deMacedo, and Rep. David Vieira. Special thanks to event chairs Jessica and Brian Caprio, the Atlantic Ave. Band, event emcee Scott Lajoie, Marie Younger and the entire Planning Committee, photographer Kat Newland, and all our Team Captains, sponsors, exhibitors and volunteers. 

 

Without your support the MDSC would not be able to offer our first-class range of programs, including Parents First Call, Advocates in Motion, Self Advocate Advisory Council, Annual Conference, Educators Forum, Allen Crocker Self-Advocate Internship Program and other education, advocacy and public awareness initiatives.

 

You're efforts help to make our mission a reality! 

MORE BUDDY WALK BY THE SEA

Buddy Walk Program

Two More Fall Buddy Walks to Show the "World Is Ours"


Nothing represents the spirit of our community more than our Buddy Walks. Having Down syndrome and loving someone with Down syndrome means wanting to celebrate it and spread the word about how our loved ones are incredible people both individually and collectively.  


Buddy Walk & Harvest Fair - Uxbridge

Join more than 500 others on September 20 at River Bend Farm for this 3rd annual autumnal-themed event. 

 

The event brings over 500 people together to celebrate the Down syndrome community and support the important work of the MDSC.

In addition to the 1-mile walk, the Buddy Walk & Harvest Fair features a raffle with tons of great prizes, a live performance by the band UP, field games by the fan-favorite Knucklebones, and a variety of other games and arts & crafts.

 

REGISTER TODAY!

Buddy Walk & Family Festival - Wakefield
Join our biggest fundraising and awareness event every year, our  Buddy Walk & Family Festival. Now in it's 18th year, this celebration takes place on Sunday, Oct. 11, the perfect time to celebrate Down Syndrome Awareness Month with family and friends. 
 

It's a real party atmosphere with tons of activities for the kids (music making, face-painting, fire truck to climb) and a stage packed with acts throughout the day that are empowering and entertaining. For the second year, we'll have a variety of food trucks on site to give you a range of lunch options whenever you get hungry. 

Running for Down Syndrome

Team MDSC Prepares to Take on Falmouth Road Race

Twenty-six runners are hitting the pavement day-in and day-out to train for the 7-mile Falmouth Road Race on August 16. These individuals are working hard not only for themselves, but to raise critical funds for people with Down syndrome. You can donate to their effort here. Just click "sponsor runner" and plug in their name. Or make a General Donation to support all our programs and services.

Danielle Athanasiadis of Lexington 
George Athanasiadis of Lexington
Alison Boutiette of Reading
Fabiola Farrell of Worcester
Kimberly Forness of Stoughton
David Granfors of Holliston 
Jennifer Graves of Topsfield
Nicholas Graves of Reading
Sam Graves of Topsfield
Stephen Hawley of Northampton 
Emily LaMarca of Clinton 
Eleanor Lawson 
Caroline Ludwig of Barre
Rebecca Marcoux of Foxboro
Alison Marshall of Watertown
Christina Marshall of Boston
Alexandra Moore of Needham
Scott Paradis of Woburn
Christopher Petkewich of Leominster
Michael Pettinella of Grafton 
Nick Pettinella of Milford
Mary-Kathryn Quinn of Stow
Ned Reichenbach of Newton
Danny Roads and Tommy Roads of Marblehead
Kyle Ross of Dartmouth
Chrystal Som of Stoneham

 

We can't say enough about these individuals, each of whom is raising critical funds for the MDSC and awareness about Down syndrome. You can read more about each of these competitors here


Boston Bruins Alumni Game

Your Chance to Skate with Bruins Greats November 22

Joe Campagna - Youngest Player Ever to Play in Boston Bruins Alumni Hockey Game
Joe Campagna - Youngest Player Ever to Play in Boston Bruins Alumni Hockey Game
We may be nearing the end of summer, but for true Bruins fans, hockey season is always just around the corner. 

 

Sign up now to join the MDSC All Stars and you'll find yourself on November 22 at the New England Sports Center in Marlborough playing head-to-head against past Bruins greats like Terry O'Reilly, Bob Beers, Reggie Lemelin, Glen Featherstone, Kenny Hodge, Rick Middleton, Tom Songin, Bob Sweeney, and Andy Brickley. See the entire Bruins Alumni roster here

 

The game is for ages 18+ with a few spots for 13-17 year olds. And the player who fundraises the most gets to be a Bruin for the day and play on their team!  

 

For more information contact Development Director Becca Canavan at [email protected].

Beacon Hill & Capitol Hill

Disability Funding Fares Well in Budget (& other news)

DDS Budget 

Governor Charlie Baker signed the 2016 State Budget on July 17, which covers the fiscal year from July 1, 2015 through June 30, 2016. Line items at the Department of Developmental Services (DDS) and MassHealth fared well, including Family Support Services, Adult Autism, Day & Employment, Transportation, and Turning 22. Thanks to Governor Baker and to the Conference Committee, chaired by Representative Brian Dempsey and Senator Karen Spilka.
 

MDSC Line Item 

For the 4th consecutive year, thanks to your emails and phone calls, the MDSC has received $100,000 of funding in FY16 state budget to support our programs and services. Thanks again to the Conference Committee Chairs Dempsey and Spilka, and Governor Baker, for supporting these essential funds. 
 

Central Mass. Down Syndrome Clinic Funding

For the 2nd year, the state provided $150,000 of funding for the Multidisciplinary Down Syndrome Clinic at UMass Memorial Children's Medical Center, a much-needed clinic created just last year whose continuation was at risk without funds. The clinic aims to provide comprehensive care for Down syndrome patients in a coordinated manner to enhance communication among the many UMass Memorial specialists who all share a special interest in Down syndrome. We expect the program to an invaluable resource for the 400 families in Central Mass. affected by Down syndrome. 
 
 

State Legislative Platform

In consultation with our Government Affairs Committee, the MDSC has finalized our State Legislative Platform for the 189th session (2015-2016) of the Massachusetts General Court. The wide-ranging policy items are critical to providing support for people with Down syndrome in Massachusetts and will pay lifelong dividends. 

Our top two priorities are: 

1) Higher Education Opportunities (H1064/S672) An act to create higher education opportunities for student with intellectual and developmental disabilities - Sponsored by Rep. Tom Sannicandro and Sen. Barbara L'Italien. 

2) Organ Transplantation Non-Discrimination (H3271) An act concerning nondiscrimination in access to organ transplantation - Sponsored by Rep. James Cantwell. 
 
 

Read the full platform here.
 

ABLE Act in Massachusetts

Massachusetts is one of 27 states that have enacted their own versions of the ABLE Act. However, Massachusetts' law precedes the federal ABLE Act, which means that it has legislation pending that will expand its ABLE language and revise it to conform with federal law. The MDSC is monitoring these developments carefully. 

National Agenda
The MDSC takes the lead in Massachusetts on the federal agenda set by our partners at the National Down Syndrome Society. The MDSC works with Massachusetts' congressional delegation on the following policies: 
  • Laying the groundwork for ABLE accounts to become available to individuals with disabilities in the Bay State (see above). 
  • Monitoring the ESEA bills and advocating for and against certain amendments on key issues.
  • Developing a robust agenda to promote competitive employment in integrated settings.
  • Supporting initiatives to improve biomedical research and medical progress for people with Down syndrome.

Annual Golf Tournament Hosted by Business Advisory Council

Trinque Family, EchoStor Technologies Partner with Sox, NESN to Support MDSC

On July 31, the MDSC was proud to be back on the field at Fenway Park because of the generosity of EchoStor Technologies and its leadership, Scott Trinque and John Dooley. 


For the second year, 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, who happens to have Down syndrome, and Family Support Director Sarah Cullen and her son Matthew, and Communications Director Josh Komyerov. 

Despite a tough July for Sox, they managed 234 hits for a total of $11,700! Not only that, EchoStor supplemented the "Red Sox" contribution by donating a total of $12,500, which will go to fund and expand MDSC programs and services for families.  
 

Once again, 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. 
 

Thanks Scott and EchoStor for your steadfast support! 

Ned Reichenbach, MDSC's Allen Crocker Self Advocate Intern, Reflects on Service

 


This spring and summer, the MDSC was lucky enough to have Ned Reichenbach of Newton serve as our Allen C. Crocker Self Advocate Intern. As you will read below in this letter from Ned, he was incredibly productive during his internship. Ned was also a true pleasure to work with - a consummate team member with a sharp sense of humor and a positive attitude. Thanks Ned! 

"Throughout the past several months, the Allen C. Crocker Self-Advocate Internship has provided me with several opportunities to explore my interests, obtain new skills, and grow personally as I look toward the future. My excitement about participating as an intern has filled me with energy as I am able to get out of the house to I work at headquarters and travel to various events.

 

I chose to focus my internship on legislative advocacy and public speaking; the former due to a desire to learn more about the process of legislation and the latter due to a passion for public speaking rooted after having spoken at my elementary school graduation. The time I have spent as an intern has allowed me to pursue my goals in a number of unique and rewarding ways.

 

Over the course of my internship, I have made several public appearances at events with the Massachusetts Down Syndrome Congress. In March, I was a keynote speaker at the MDSC Annual Conference in Worcester, where I shared my own story with teens and young adults participating there (photo above left). At the MDSC Eighth Annual Corporate Golf Tournament, I spoke to golfers and guests, including current players and alumni of the Boston Bruins, on the theme of employment. While at the Golf-a-thon, I was also interviewed by Dirty Water TV (photo above right)." 

 

Read more about Ned's internship experience...

 

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