MDSC Masthead
UpSide Weekly No. 28
Save the Date for MDSC Advocacy Day
Be Boston Strong this Marathon Day
2nd Trottier Breakfast "Pays It Forward"
MDSC in the News
Buddy Walk on Washington
John Dunleavy to Deliver Keynote
Special Ed Webinar Series Continues
Research Opportunities
MDSC Upcoming Events
Volunteer at our Annual Conference
Bruins Support Ds with 50/50 Raffle
See Your Champions Photos at Annual Conference
March 8, 2014 | No. 28
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Save the Date for MDSC Advocacy Day

 

The MDSC recognizes that systemic, large-scale change to benefit people with Down syndrome and their families in Massachusetts, in some respects, must start on Beacon Hill. 

 

That's why we're holding our first-ever Massachusetts Down Syndrome Advocacy Day on Tuesday May 27 at the State House at 11 a.m. 

 

Please join us as we walk the halls to lobby our legislators to pass key legislation, such as the National Background Record Check Bill and Real Lives Bill. 

 

It will be an opportunity to connect with your local legislators, tell your story and make sure they put a face to critical disability bills and line-items. Stay tuned for more information.

Be 'Boston Strong' this Marathon Day

 

Donate to MDSC Champions Marathon Team 

If you can't run 26.2 miles to support your loved ones with Down syndrome, no worries. These brave souls are doing it for you: Ivana Culic, Emily LaMarca, Sarah McKitterick, Josefina Oliva, Kari Olsen, Holly Salegna, Andrew Thompson, Jim & Colby Wagoner, Meghan McAuliffe & Kristine Cox. Our Champions Marathon Team are already getting out there in the wee small hours (even in weather like this) to champion the acceptance and inclusion of people with Down syndrome. Please help support their individual journey and their collective effort to support the real lives of people with Down syndrome. Click below to give. 

 

2nd Trottier Breakfast 
'Pays It Forward'

 

Last Saturday, Kelly and Russ Trottier hosted their 2nd Annual Charity Breakfast at their local Knights of Columbus in Whitinsville, MA. 

The event is inspired by their 2-year-old son Colin, who has Down syndrome. It raised $7,000, half of which will go to the MDSC's programs and services. 

"I have always viewed life as an opportunity for each person to leave it a bit better than each of us had experienced," Russ Trottier has said. "The MDSC does this every single day for many families across Massachusetts. Whether it is through awareness programs, public policy advocacy, or special programs that support new/existing families - our family has personally experienced the caring work of the MDSC." 

 

If you'd like to hold your own community fundraiser in your town, we can help. Contact MDSC Development Associate Becca Canavan at bcanavan@mdsc.org. 

MDSC in the News


Bruins Give Boy With Down Syndrome Memorable Day


 

 

When they're playing in games, NHL players are a fearsome bunch. But when they're off the ice, they're some of the most generous athletes you could ever find.

 

Adam McQuaid, his teammates and the entire Boston Bruins organization helped give 7-year-old Liam Fitzgerald of Northborough the thrill of a lifetime. Liam, who has Down syndrome, dressed up as his favorite Bruins player, Adam McQuaid, last Halloween. When the Bruins defenseman heard the news, he invited Liam and his family to the Garden to be his special guest for the game on Feb. 1 against the Oilers. 

 

"We are thrilled that Liam and his family were able to have a night to remember at the Bruins game," said Maureen Gallagher, the executive director of the Massachusetts Down Syndrome Congress.

"The family has given so much to the MDSC, and now the Bruins organization has given so much to them. The Fitzgeralds and the Bruins are true champions!" Read more...

 

Reilly and Anton Conquer Beacon Hill






If there were a list of the most dedicated people at the Massachusetts State House, chances are you'd find John Anton and Melissa Reilly on it.

 

Anton and Reilly, both adults with Down syndrome, are part-time aides in the offices of a pair of local legislators - Anton works in the office of state Rep. Tom Sannicandro, D-Ashland, and Reilly works for state Sen. Jamie Eldridge, D-Acton. 

 

Anton, who has also served as a Congressional intern in Washington D.C., was honored last year with the Allen. C. Crocker Award of Excellence, the highest award given by the Massachusetts Down Syndrome Congress. He is heading back to the Capitol again this month to lobby for the passage of the Achieving a Better Life Experience Act. Read more...   

 

New Study Suggests Wider Use of Prenatal Tests 

 

 


A large new study led by Boston researchers shows that a simple blood test is superior to standard screening methods for detecting chromosomal abnormalities in a fetus, paving the way for a new generation of prenatal genetic tests to be offered to all pregnant women.

 

The Down syndrome advocacy community has already been preparing for the wider use of the test. The Massachusetts Down Syndrome Congress, for example, has revised its Parents First Call program, which provides resources for parents of children with the disorder, to place greater emphasis on prenatal diagnosis and expectant parents. Read more...
Walk on Washington Yields Connections, Results
16 MDSC Advocates Meet with Delegation on Capitol Hill   

  

MDSC advocates are just back from our nation's capital where we participated in a rewarding and fruitful Buddy Walk on Washington, organized by the National Down Syndrome Society.

 

For the 5th consecutive year, 16 MDSC representatives fanned out across Capitol Hill, where we personally met with all 11 congressional leaders to advocate for key policies to enhance the lives of people with Down syndrome. 

 

Our contingent - along with 320 people from more than 35 states across the country - was specifically asking legislators to support three priorities:

  • Co-sponsor/sign letter supporting the ABLE Act and encouraging a vote on the House floor. 
  • Request hearing to explore connection between Down syndrome and Alzheimer's Disease
  • Join the Congressional Down Syndrome Caucus

Even before the Buddy Walk on Washington, the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647)  had amassed the support of 400 members of Congress - 340 US Representatives and 64 Senators. With that level of support, there is no reason that it shouldn't be brought to the floor for a vote as quickly as possible.

  

The reception we received from the Mass. Congressional delegation was heartening. The newest member of Congress, Katherine Clark (who has a long history of supporting the disability community including speaking at our Buddy Walk last year), enthusiastically agreed to co-sponsor the ABLE Act. That means that once again our entire Bay State delegation is backing the critical bill

that will help people with disabilities and their families by letting them set up tax advantaged savings accounts to save for their future without losing access to important benefits such as SSI and Medicaid.

 

In the coming weeks, we will be closely tracking who has followed through with our requests. Stay tuned to our Facebook page for the latest. 

 

Our Buddy Walkers included John Anton of Haverhill, Kate Bartlett of Arlington, Colleen Endres of Somerville, Maureen Gallagher of Needham, Fran Hogan of Haverhill, Shey Jaboin and Tara Toussaint of Salem, Donna Jay of Salem, Patricia Jennings of South Boston, Ann Kelly and Katie DeVellis of Lexington, Josh Komyerov of Somerville, Arthur McLaughlin of Hanson, Stephen Narey of Williamstown, Laura Noble of Winchester and Rodel Treggiari of Salem.

Special thank you to our Massachusetts congressional delegation - the senators and representatives or their staffs who took the time to sit down with us: 

Senators Elizabeth Warren and Ed Markey, and Representatives Richard Neal, Jim McGovern, Niki Tsongas, Joseph P. Kennedy III, Katherine Clark, John F. Tierney, Mike Capuano, Stephen Lynch, and William R. Keating

Early Bird Ends Monday
Having Given Pep Talk to Bruins, John Dunleavy to Deliver Keynote Speech at Annual Conference

 

John Dunleavy has worked for the Boston Bruins less than two years. Four days a week, from his home in Winchester,  John takes the commuter rail to the TD Garden, where he is  responsible for mailings, maintaining photocopiers, filling orders, and stocking the break room. He has his own official badge, which allows him to cross the street to another building to work on ticketing projects for the Bruins and Celtics. John even works the games, carrying cables and taking care of other tasks in the control room.

 

In his short time there, John has already become a well-loved member of the Bruins front office.  Because of his enthusiasm, the cameramen working the games routinely find John and show him on the Jumbotron for the whole crowd to enjoy. In mid November, Bruins Coach Claude Julien asked John to give his team a pre-game pep-talk. As highlighted on the New England Sports Channel's "Behind the B", after John's speech the Bruins went on to an overtime victory against the Columbus Blue Jackets. Later that month, John was asked to be the honorary coach for the Boston Bruins Alumni as they faced off against the MDSC All-Stars in our annual charity hockey game. 

 

John is a true Champion, and we are thrilled to have him go from addressing the Bruins to giving the keynote address at our 30th Annual Conference.  He will join over 600 people with Down syndrome, their family members, health care professionals and educators from across New England who will gather to hear the latest research findings and timely information from national and local experts on a range of topics related to Down syndrome. 

 

Coach John Dunleavy Victory Speech with Rick 'Nifty' Middleton, Bob Sweeney, other Bruins and Fans
Coach John Dunleavy's Victory Speech with Rick 'Nifty' Middleton  
and Bob Sweeney after Bruins Alum defeat MDSC All-Stars
Early Bird Ends Monday

New Free Special Ed Webinar Series Continues 

MDSC Will 'Demystify MCAS-Alt' Next Wed Night

 

The results of our membership survey spoke loud and clear, and we got the message - navigating your child's educational maze is hard, and you need help. That's why we launched a new Special Education Webinar Series related to particularly challenging topics in the field of disability education. 

 

Join MDSC Education Director Mo Blazejewski, a veteran educator with more than 17 years of experience in the field , on Wednesday, March 12 at 7:30 p.m. for a session titled "MCAS-ALT - Demystifying the Portfolio." 

 

The free workshop is interactive and informative and all you need is internet access to participate. In this presentation, parents will learn about the process that a school based team goes through in order to create a student's alternate assessment portfolio. We will look at the specific guidelines related to the Massachusetts Curriculum Frameworks (Incorporating the Common Core Standards) and discuss how an assessment portfolio differs from a progress portfolio in the classroom. Register here.

 

You can see our archived first workshop in our new series below.  

 

How to Work Effectively With Your IEP Team: An MDSC Education Webinar
How to Work Effectively With Your IEP Team: An MDSC Education Webinar
 

 

RESEARCH OPPORTUNITIES FOR MEMBERS

 

Kids Mealtime Study Seeks Participants 

Shriver Center recruiting children with intellectual disabilities for nutrition research study

The E.K. Shriver Center/UMass Medical School is recruiting for children with intellectual/developmental delays ages 3-8 to participate in a research study. The study will examine the eating patterns, mealtime behaviors, and parent feeding practices of children with intellectual/developmental delays and typically developing children. Additional information including a downloadable study brochure can be found at: http://umassmed.edu/shriver/recruit/Childrens-Mealtime.aspx. Contact Alyssa at 774-455-6521 or Mealtimes@umassmed.edu with any questions.  

   

Study Explores Paternal Influence on Sex Ed

Exploring Fathers' Roles and Experiences with Dissemination of Sexual Health Information to their Children with Down syndrome

Adolescents with Down syndrome experience puberty at the same time as their typical peers, yet often require more help from their families in understanding their changing bodies and navigating romantic relationships. Lillian Torrey, a graduate genetic counseling student at Boston University, is conducting a study to investigate fathers' roles in disseminating sexual health information to their children with Down syndrome. The study aims to better understand when and how this dialogue is initiated, the resources fathers utilize to inform these conversations, and the concerns, challenges and experiential advice fathers wish to share with other fathers. Participants must have a child with Down syndrome between 16 and 30 years old. If you would like to participate, or learn more about the study, contact Lillian Torrey at 617-549-9356 or ltorrey@bu.edu

  

MGH Clinical Trial to Evaluate Study Drug 

Dr. Brian Skotko and his research team from the MassGeneral Hospital Down Syndrome Program are starting another study drug trial. In this clinical trial, an investigational medicine, not yet approved for sale by the FDA, will be studied in people with Down syndrome who meet eligibility criteria. This study drug is hoped to improve the cognitive capacities in some people with Down syndrome. There are a limited number of spots for this clinical trial, and eligible patients are screened in the order in which they contact the research team. This study is being funded by Elan, the developer of the drug in the upcoming study. The upcoming clinical trial will evaluate the safety of the study drug and how it works in the body. The study will take place over 10 weeks and will include 5 clinic visits. 

To see if your family member is eligible to take part in the study, please review the questions at www.massgeneral.org/downsyndromeresearch. If you would like your family member to participate in this study, or if you have further questions, contact Mary Ellen McDonough, RN, Senior Clinical research Coordinator in the MassGeneral Hospital Down Syndrome program at, 617-643-5571 or mmcdonough13@partners.org.

  

See here for complete information about these and other studies approved by the the MDSC's Medical & Scientific Advisory Council. 

  

The MDSC's Medical and Scientific Advisory Council selects a number of studies each year that will be made available for the MDSC members. Each proposal is carefully reviewed for content, ethics, and feasibility before forwarding the information onto our members. The MDSC is sensitive to the confidential nature of our membership information and at no time does the MDSC sell or share member information with researchers.

MDSC UPCOMING EVENTS 

   

"Full Life Ahead" Series - Using Total Communication
Wednesday, March 26, 7 p.m. MDSC Office Conference Room, Burlington
Join us at our next Full Life Ahead Workshop on Wednesday, March 26. We will cover "Transitioning to a Full Life Using Total Communication." You will hear about a novel and comprehensive approach to preparing a young man for an interdependent full life in his community. Learn about the process of successfully working with a school district open to thinking bigger about the possibilities of how to successfully prepare a student for adult life. Parent Cindy O'Connor will talk about how this total communication approach developed for her son, who has autism and is non-verbal, set the stage for consistency across work, volunteerism, recreation and daily chores in his own apartment. The session will be held from 7 to 9 p.m. at the MDSC Office at 20 Burlington Mall Road, Downstairs Conference Room, Burlington, Mass. Come learn how to build a healthy, vibrant community. RSVP to Susan Nadworny at snadworny@riversidecc.org. Space is limited. 
 
D.A.D.S. Mass Father's Night Out
Friday, March 28, 7 p.m., Kings Bowl America, Dedham
Dads Appreciating Down Syndrome is pleased to announce a Father's night out at Kings Bowl America (600 Legacy Pl. Dedham, Ma). This is a first come, first serve RSVP only event for the first 15 people who sign up. Cost per person is $20 and includes 2 lanes, 2.5 hours of bowling, shoe rental, appetizers and pizza. RSVP to Jeff Roback (dadsmass@yahoo.com). For more information on Kings please visit www.kingsbowlamerica.com 
 
Grandparent Socials
March 26 (Wilbraham), March 29 (Centerville) 

Grandparents of children with Down syndrome are warmly invited to join us for our grandparent socials, informal get-togethers for grandparents of children with Down syndrome where you can share, care, and ask any burning questions you may have. Come meet other grandparents and learn more about the MDSC and helpful resources. Grandparent socials are scheduled in tw o locations:  

  • Wednesday, March 26 from 7 to 8:30 p.m. at the Wilbraham Public Library, Crane Park (off Main St.).  RSVP to Sue Laing at dsgrandparents@gmail.com
  • Saturday, March 29 from 11:00 a.m. to 12:30 p.m. at the Centerville Public Library conference room, 585 Main Street, Centerville. All grandparents of children with Down syndrome are welcome. RSVP to Barbara Sherman at barbarasherman@gmail.com or mdsc.grands@comcast.net
Free Tickets to 'Circus of the Senses'
Tuesday April 1, 11 a.m., City Hall Plaza
Marc Epstein of our D.A.D.S. affiliate has secured 100 free tickets for the Big Apple Circus' "Circus of the Senses", a show specifically designed for people with disabilities. The showing will be Tuesday, April 1 at 11 a.m. at 1 City Hall Plaza, Boston. If you have a child or loved one with a disability and are interested, please contact Sarah Cullen at scullen@mdsc.org. (Limit 4 tickets per family). Include names of the individuals who would like to attend, as well as a contact phone number...First to respond, first to go!! Please be sure you can attend before responding. Marc will meet the group outside the main entrance at 10am to get a group photo, check names, and hand out tickets so the group can be seated at 10:30am for the 11am show. Feel free to share with other families who include someone with a disability. See more about "Circus of the Senses" here.

 

AIM Teen & Young Adult Program

Sunday March 30 & Saturday April 5

Join our Advocates in Motion program for our March event, "Making Good Choices" on Sunday, March 30th, 12:30-3:30pm at the West Suburban YMCA, 276 Church Street, Newton, RSVP to aim@mdsc.org. This event is open to AIM members (self advocates 13-22). The focus of the day will be on making good food choices, and we have some yummy activities to help us out! Join us for fun games and create your own delicious and nutritious smoothie!

 

Then, on April 5, from 5 to 7 p.m., join the MDSC's Self-Advocate Advisory Council (SAAC) for a Karaoke Night for adults 21 and over at Bentley University. The event is hosted by the SAAC and Bentley University Best Buddies. This is the SAAC's first adult quarterly event. RSVP to saac@mdsc.org. Detailed directions will be sent out to attendees. This event is co-sponsored by the Best Buddies group at Bentley University.

WE WANT YOU....TO VOLUNTEER TODAY!

 

Looking for a way to support people with Down syndrome? Volunteer to help us at our Annual Conference on March 22. We guarantee that you'll have fun and feel good afterwards.  Just fill out this application and we'll be in touch. 

Bruins Support Ds with 50/50 Raffle 

  

On March 1st, MDSC Teen and Adult Services Facilitator Ashley Coates and 15 volunteers walked the halls and stands of the TD Garden raising funds to support people with Down syndrome. 

 

Every year, as part of the MDSC partnership with the Boston Bruins Foundation, the MDSC is the beneficiary of a 50/50 raffle event at a Bruins game to support our Down syndrome programs and services. At this year's game, the Bruins faced off against the Washington Capitals. Special thanks to our amazing volunteers and the Boston Bruins Foundation for its continued support!  
See Your CHAMPIONS Photos at our Annual Conference

 


 

One of the major highlights of our Annual Conference every year has been the chance to bring our theme to life through your photos. Given our theme this year - CHAMPIONS! - we were especially excited, and once again, you delivered. Now that all submissions are in, we are busy taking your "Champion" photos and putting them to use them throughout our conference materials. Look for them on conference banners, brochures, rolling slideshows and our video montage. 

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