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MDSC to Celebrate 31 years at Conference March 28, 2015
Mark your calendars for the MDSC's 31st Annual Conference on March 28, 2015

 

The conference marks the launch of both our Annual Theme and the Buddy Walk Season. We will present the MDSC's annual awards and highlight the awesome accomplishments and successes of self advocates. 

 

Yes, it will be held a week later than usual, but as always, will feature experts from around the region and around the nation presenting on a spectrum of issues related to how to best serve our loved ones with Down syndrome. 

 

Registration will open in January! Stay tuned to our website and whatever social network you prefer. Like us on Facebook Follow us on Twitter Find us on Google+ View our profile on LinkedIn View our videos on YouTube

AIM Has It All: Music, Dance, Sports, Theatre & More! 

 

  

Our AIM participants took to the water last month at an indoor kayaking event with Waypoint Adventure at the Newton YMCA. 

 

And just yesterday some AIM members ventured to the Boston Opera House to see the Boston Ballet's performance of the Nutcracker. 

***

Here's what AIM has coming up next...

 

 

 

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! Contact Teen & Adult Services Director Colleen Endres for more information at cendres@mdsc.org. 

 

Research Opportunities
Highlight: New Study Looks at MRIs Without Sedation

 

The MDSC is dedicated to ensuring that all members have information about and access to the latest research opportunities. Here are two of the current opportunities for participation that have been approved by our Medical & Scientific Advisory Council. For a fuller description on each of these and more studies including contact information and how to apply, see here.


MRI Without Sedation - UMass Medical Center 

The UMass Center for Clinical and Translational Science is conducting a study to determine if there are ways to help children and adolescents with Down syndrome and Fragile X syndrome undergo MRIs without needing to be sedated, and to learn more about the features of the brains of children and adolescents aged 7-17 with Fragile X or Down syndrome. For more information go here or email childresearch@umassmed.edu

 

Effects of Drug on Learning, Memory, and Language - MassGeneral Hospital
MassGeneral Hospital is conducting a protocol for a drug that might improve cognitive capacities in some people with Down syndrome. 180 people with Down syndrome worldwide will take part in this study, which is funded by F. Hoffman-LaRoche, the maker of the study drug. The clinical trial will evaluate the effects of the study drug on learning, memory, and language abilities in people with Down syndrome ages 12- 30 years. There are currently spots available for ages 12 to 17. 

 

Participants will be compensated up to $750 for your participation. To see if your family member is eligible go hereIf you would like to participate or have further questions, please contact: Mary Ellen McDonough,RN, Senior Clinical Research Coordinator in the MassGeneral Hospital Down Syndrome program at 617-643-5571 or 

mmcdonough13@partners.org

 

Project Play - Northeastern University

Seeking to evaluate children's play as a developmental process across the age span of 8 months to 5 years. Karin Lifter, Ph.D. and her research team from the Department of Counseling and Applied Educational Psychology at Northeastern University are currently looking for families who live in the Boston metropolitan area and who have a child who is developing with a delay. Their goal is to develop a user-friendly instrument that teachers and providers can use to evaluate a child's progress in play, and particularly for children with delays and disabilities. The ultimate goal of their instrument is to be able to evaluate children's play for the purposes of designing interventions for them. Contact the Project Play team by calling (617) 373-3297 or emailing projectplay@neu.edu.

 

Children's Mealtime - E.K. Shriver Center/UMass Medical School

The Children's Mealtime Study is looking for children with Down syndrome, Fragile X, and/or other intellectual disabilities ages 3-8 to participate in a research study on children's eating patterns, mealtime behaviors, and parent feeding practices. The study involves one 2-3 hour visit at a UMass Medical School-affiliated site and parents complete a 3-day food record at home.  Parents will receive up to $85 compensation in the form of a gift cards; children will receive a $15 gift card for their participation. Contact Alyssa at 774-455-6521 or email Mealtimes@umassmed.edu.

 

Please note: The MDSC is dedicated to ensuring that all members have information about and access to the latest research opportunities; we review each research proposal for content, ethics, and feasibility before forwarding information to you. At no time does the MDSC sell or share your MDSC member contact information with researchers. The MDSC will not be informed by the researchers about who agrees to participate in this research. Your agreement to participate or not to participate will in no way impact any services, support, or resources that you receive from the MDSC. To read about this and other Research Opportunities, go here.

SAAC Member News
John Dunleavy Receives Prestigious Irish Award 

 

We were honored to attend the Irish Heroes of New England Awards 2014 where our very own John Dunleavy received an one of these prestigious awards alongside some other remarkable awardees. 

 

John is an exemplary ambassador for the MDSC and member of the MDSC Self-Advocate Advisory Council. John's award was also featured in a spread in Boston's major Irish newspaper. Congratulations John and thank you for everything you do to inspire others each and every day.

 

As John says, "My story and this honor will hopefully inspire others to never give up and also to help make a difference." Nice work, John!
 


Crocker Internship 
Self Advocate Internship Applications Now Accepted

 

The MDSC is now accepting applications for the Dr. Allen C. Crocker Self Advocate Internship Program. Each Crocker Internship will give a self-advocate an opportunity to work in our Burlington office on a project of their choosing for a period of 3 to 5 months. 

Crocker Interns will gain valuable work experience, develop leadership skills, and earn money. In doing so, they will advance the shared mission of the MDSC and Dr. Crocker, promoting the acceptance and inclusion of people with Down syndrome. Dr. Crocker passed away in 2011. 

Examples of Crocker Intern Project Areas include Legislative Advocacy, Office Work (answering phones, filing, making copies, etc.), Community Outreach, Public Speaking, Event Assistance, Social Networking/Blogging. Or come up with your own proposal! 

 

See an application here. Send an email to intern@mdsc.org with questions.

 
LANDMARK 'ABLE ACT' PASSES HOUSE
Take Action Now to Ensure it Becomes Law
After a long 8-year effort to educate Congress about the financial hardship facing people with Down syndrome and other disabilities, the ABLE Act passed the House by a vote of 404 to 17.
ABLE Act advocates Sara Weir, Interim President of NDSS and John Anton, MDSC Advocacy Specialist in Washington, D.C. 

 

The landmark legislation will head to the Senate this week and we'll keep working on it until it passes and is signed into law.

 

"The MDSC truly appreciates the advocacy efforts of our members," said MDSC Executive Director Maureen Gallagher, "starting with the dozens of dedicated volunteers who joined us at the NDSS Buddy Walk on Washington, not to mention the hundreds of you who made phone calls, sent emails and took to your social networks to get the ABLE Act passed in the House. Now, it's on to the Senate!" 

 

The measure would allow people with disabilities to set up savings accounts - with no tax on the earnings, similar to 529 college savings accounts - to cover housing, transportation and other expenses. They would be able to build up a financial cushion in their "ABLE accounts" without jeopardizing their eligibility for Medicaid and Social Security benefits. Under current law, to qualify for Medicaid and Social Security disability benefits, people with disabilities cannot have more than $2,000 in assets and cannot earn more than about $680 per month. There are 54 million Americans who have physical or intellectual disabilities, although only a subset of that population would be eligible and able to take advantage of the ABLE Act accounts. Read more about the ABLE Act here.

 

Arthur McLaughlin was one of the MDSC members who travelled to Washington, D.C. with us last winter to lobby his members of Congress. "The ABLE Act will give our family and our 10 year old grandson, William, who was born with Down syndrome, the ability to save for the future without being hamstrung by the $2,000 asset limit," McLaughlin said. "The ABLE Act will finally give William and other physically and intellectually challenged citizens a real opportunity at independence and rising above the poverty level."

 

No other bill before the 113th Congress has the ABLE Act's bipartisan and bicameral support - 74 United States Senators and 381 Representatives are co-sponsors. In addition, more than 100 disability rights groups support the ABLE Act. "This is a monumental, landmark bill for people with Down syndrome and our families," said Sara Hart Weir, NDSS Interim President. "This bill will change the way that families can save for all their children and adults with Down syndrome and will ease the unnecessary burdens that are placed on families - all while allowing people with Down syndrome to work and save for the future. We look forward to it going to the Senate floor for a vote and its eventual signage into law."  

 

The bill could come up for a vote in the Senate as early as this week. Speaker of the House John Boehner said he's been working with Senate Majority Leader Harry Reid and Minority Leader Mitch McConnell to make sure there are no last-minute hitches, according to USA Today. 

 

TAKE ACTION NOW TO PASS THE ABLE ACT!

We are now onto the Senate and need

5 minutes of your time to help with the final push to pass the ABLE Act! Please call your Senators TODAY asking them VOTE YES on the ABLE Act this week! 


 

For BayStaters, you can reach Sen. Elizabeth Warren's office at (202) 224-4543. Sen. Ed Markey can be reached at 202-224-2742. 

Talking Points:
I am (give your name and where you live). I am a (parent, sibling, grandparent, aunt/uncle, teacher, friend) of a person with Down syndrome. 
 

  • I'm calling to ask Senator [Markey/Warren] to VOTE YES to the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313) this week!
  • The ABLE Act passed with overwhelming majority in the House Wednesday, December 3rd with 404 Yeas.
     
  • The ABLE Act will make a life-changing difference in the lives of the disability community and long overdue- please VOTE YES.

Thank you for making a difference (and an investment in the future of our loved ones)! 

MDSC at the Buddy Walk on Washington with Congressman Bill Keating (2nd from left), a strong supporter of the ABLE Act. MDSC Advocates include (L to R) Maureen Gallagher, Katie Bartlett, Arthur McLaughlin, Colleen Endres and Josh Komyerov.
 
ALL-STARS VICTORIOUS OVER BRUINS ALUM IN WIN-WIN FOR DS COMMUNITY
Hockey Game Co-Chair, Scott Trinque (center), with his children Theo and Zoe and YouTube Sensation Liam Fitzgerald drop the ceremonial puck to start the game.
For the past decade, our Bruins Alumni vs. MDSC All Stars Hockey Benefit has raised awareness and fostered a wonderful partnership between our organization and the Bruins alum. On Sunday, November 23, at our 10th Annual MDSC All Stars Vs. Bruins Alumni game the fruits of this relationship was borne out in countless ways. 

You might argue that the highlight of the event was what took place on center ice, where for only the 2nd time in the history of our game, the All Stars actually won - and by an impressive 11 to 6 score on the back of goalie Matt LaBarge. As Bruins legends Rick "Nifty" Middleton and Bob Sweeney noted afterwards, they love playing this event because of the real difference it makes for our members; but they hate losing. Congratulations All Stars, but watch out - next year might be a different story! 

The game itself brought a lot of excitement to the New England Sports Center and there were so many other things to smile about: 
#Liam4DS 
YouTube sensation Liam Fitzgerald was a huge hit in our #Liam4DS Photo Booth, where he gave out fist bumps to his many fans. He was a true superstar. You can see, download and purchase your photos with Liam here

Coach Dunleavy 
MDSC Self Advocate Advisory Council Member John Dunleavy, who works in the Bruins front office, gave an inspiring pre-game speech to the Bruins in his role as honorary coach. 

Self Advocate National Anthem
A group of MDSC Self Advocates belted out the National Anthem, led by Miss Outstanding Teen Massachusetts Courtney Adelman, whose brother Evan was among the singers. The other self advocates were: Jennifer Barrett, Jordan Caira, Sara Crookes, James Hintlian, Daniel Kinchla, Colleen MacPhee, Marley Sommer, Leah Toronto. Nice job everyone. See the performance here

Bruins Greats
The amazing Bruins Alumni made the day of so many of our members by taking the time to hold their hand or push them around the ice during Free Skate and sign autographs, take photos and connect with them at halftime. See the Bruins introductions here. Congratulations to Bruin Tom Songin, who garnered an MDSC Helping Hands Award for taking the time year-after-year to connect with and support our members/his fans in real and meaningful ways. See the presentation of that award here

Silent Auction
Thank you to all the individuals and organizations who donated amazing items to our silent auction and congratulations to all the winners. Whether you won a ride on a zamboni at a Bruins intermission, VIP tickets to a Dropkick Murphy's show, a Mike Napoli autographed baseball or a round of gold at one of the state's premier golf courses, we hope you enjoy it and we appreciate your support! 

Leadership
The event would not have been the success it was without the visionary leadership of co-chairs Charlie Gadbois and Scott Trinque, both successful businessmen and loving fathers to children with Down syndrome. It was an amazing moment when Charlie, who founded the hockey game 10 years ago, handed over the reins of the event to first time co-chair Scott, who took home an MDSC Helping Hand Award. And as a special remembrance, Scott gave Charlie a 10th Anniversary recognition award for his long time dedication to the event, which has raised over a ½ million dollars for the MDSC over the years. 

Photos and Videos
Thanks to our awesome crew of volunteer photographers, including John Crookes (who manned our #Liam4DS photo booth), Mary Ellen McDonough and Andy Christian. Check our all their photos at the links above. See here for our YouTube playlist of all the formal ceremonies and more. 



10th Annual Educators Forum
Hundreds of Educators, Parents Learn Latest Best Practices on Meaningful Inclusion; Ed Manual Resource Guide Unveiled





Hundreds of educators and parents descended on the Hogan Campus Center at Holy Cross College in Worcester for the MDSC's 10th Annual Educators Forum. 

 

Special thanks to our three amazing introductory speakers: Keynote Speaker Bill Henderson, Self Advocate Keynote Speaker Melissa Reilly and Christopher Barnes, principal of Arlington Memorial High School in Arlington, Vermont, and MDSC board member. All three gave uniquely inspiring speeches based on real life experiences that set the tone for the day. 

 

Thanks also to all our speakers, exhibitors, teachers and parents for making it another inspirational, educational day focussed on how best to serve our loved ones with Down syndrome! MDSC Education Director Mo Blazejewski pulled it all together. 

 

At the forum, we unveiled our first publication, Meaningful Inclusion for Students with Down Syndrome: A Resource Guide for Elementary Educators, which all attendees received. If you would like to order your copy, go here

 

A range of workshops will bring to life the best practices for educating students with Down syndrome in an inclusive classroom. The 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. 


 



 

2015 Boston Marathon
Introducing Team MDSC Runners from Around Mass. & Beyond







 

We are excited to announce our 2015 Boston Marathon Team as part of the John Hancock Non-Profit Marathon Program!

 

Lisa Adelman of Middleborough, MA

Lisa is running in honor of her 14-year-old son Evan.  Lisa has been part of MDSC's Falmouth Road Race team for 8 years and will be running Boston as her second Marathon!

 

John Clark of Ontario, Canada

John has been involved in Canadian charities that advocate for people with intellectual disabilities and is excited to join Team MDSC for the 2015 Boston Marathon!

 

Eddie Hulten of Bethesda, MD

Eddie is running in honor of 5-year-old relative Lucas Jonas.  Eddie ran for Team MDSC in 2013 and is back to re-claim the finish line!

 

Emily LaMarca of Clinton, MA

Emily is running for Team MDSC for the Boston Marathon for her 6th year!  Emily is running in honor of her 8-year-old son Cole, the inspiration behind so many of her remarkable achievements and events that support MDSC.

 

Andrew Thompson of Westford, MA

Andrew is running on Team MDSC for the second year in a row in honor of his 2-year-old son Drew.  Andrew and his wife Danielle are very involved in MDSC through the Buddy Walk and Morning Traveler's support group.

 

Ryan Trott of Waltham, MA

Ryan is running in honor of his sister Katy, who continues to inspire him with her bubbly attitude and contagious smile.

 

Go here to learn more about Team MDSC or donate to one of our runners. 

 

We are still looking for qualified runners to join Team MDSC.  

Benefits of joining the team include: MDSC running singlet, transportation to race starting line, fundraising and running training tips, included in all CharityTeams weekly training runs and themed long-runs with thousands of other charity runners, invitation to MDSC pre-race event, invitation to CharityTeams pre-race event, communication with CharityTeams founder and coach Susan Hurley.  For more information, please e-mail Becca Canavan at race@mdsc.org.

First Call Program
Baby Sign Language Class Teaches Benefits, Techniques

 

Seven families attended our recent "Baby Sign Language" class with Sheryl White (www.babykneads.com). 

 

Sheryl shared the many advantages to using sign language with babies, including that it... 

  • Reduces frustration
  • Gives babies the ability to express themselves before they can speak
  • Accelerates baby's development of speech
  • Enhances early literacy skills
  • Deepens bonding with parents and caretakers

We were delighted to have Cordelia and her mom as part of the group. Cordelia is now an Arlingtonian, but until recently she was in an orphanage in China, from which she was adopted. She is doing great! 

Sweet Baby Gabe - A Family's Surprise Blessing 
by Margot Slowick
   
The story of "Sweet Baby Gabe" encapsulates much of what the MDSC does - helping families make the remarkable journey from fear of the unknown to acceptance to ultimately celebrating their child's life. 
 
Read below how Matt and Margot Slowick felt when they received a Down syndrome diagnosis last year, and how they came to realize, with the support of the MDSC and others, that their son (and maybe even the diagnosis itself) is a blessing. 

The journey to acceptance and inclusion isn't easy, but almost all our families go through it and that's why we're here - first to help them see the possibilities, then to help the whole world see those possibilities.


Read the Slowick's full story here 

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