MDSC Masthead
UpSide Weekly No. 25
DADS to Hold Holiday Party
Down Syndrome Autism Connection Chats
MFOFC Leadership Deadline Approaching
Complex Needs Group Tackles Behaviors
Share Your K-6 Ed Photos
Educators Forum Returns with a Vengeance
MassGeneral Recruiting Study Participants
State & National Policy Initiatives Ramp Up
Old & New Families at Latest New Family Social
Romanian Family Touched by Parents First Call Program
December 4, 2013 | No. 25
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D.A.D.S. to Hold Holiday Party Saturday

 



Dads Appreciating Down Syndrome, an MDSC affiliate, will hold its annual Christmas/Holiday party on Saturday, December 7 from 12:00pm-3:00pm at the American Legion Hall, 44 South Street, Plainville, MA. Pizza will arrive at 12:00pm, entertainment at 12:30pm and Santa will join at 1:00pm. If you would like your child to receive a gift from Santa, please bring a wrapped gift labeled with his/her name.  Please RSVP to KC Paul at [email protected]  When RSVP'ing please let him know if you are able to bring any drinks, side dishes, and/or desserts. 
 
DADS members Shannon and KC Paul have set up a "Sibshop" on January 18, 2014 for the siblings of children with Down syndrome. It will be held from 11:30am-2:30pm.  Pizza will be served at 11:30am and workshop(s) will start at noon.  It will be held at the ARC in Attleboro, 141 Park Street.  Please RSVP to Shannon/KC at [email protected] if your child will be attending.  When RSVP'ing please indicate the age of the children.  Space is limited.  This will be for all ages but will split into groups so they may have to run two workshops. Funding for this event has been generously donated by 21 FrienDS.  Please visit here for more information about Sibshops.


Are You Impacted by Ds & Autism? Join Us

 

If your loved one has a co-occurring diagnosis of Down syndrome and Autism or you're wondering whether your child with Down syndrome may be affected by an autism spectrum disorder, you are not alone.

The DSAC of Massachusetts, an affiliate of the MDSC, provides education, support and inspiration for the DS-ASD journey. Join their online chat group the second Monday night of every month at 8:30 p.m. The next chat will be Mon. Dec. 9. For more information, contact 
[email protected].

Leadership Series Deadline Nearing 

 

Applications for Mass. Families Organizing for Change's Family Leadership Series are due December 13. 

 

The Leadership Series focuses on supporting families and individuals to live in their communities as naturally and typically as desired. The series is organized into three two-day workshops (and a final wrap-up day) focused on Initiative and Leadership; Creating a Vision; and Policy Making at the Local, State and Federal Level.

  

Northeast Region Series

  • January 31 & February 1
  • February 28 & March 1
  • April 11 & 12
  • April 26

The event is held at the Courtyard Marriott Boston/Woburn North. Space is limited. Click here  for full details and link to application. 

Complex Needs Group Tackles Behaviors
(L to R) Dr. Emily Davidson, Dr. Nicole
Baumer and Sarah Cullen
 
Our Complex Needs Support Group met on Saturday at Children's Hospital Waltham, where experts tackled how to deal with challenging behaviors in children with Down syndrome and complex needs. 
 
Presenting were Dr. Nicole Baumer, a neurologist at Children's Hospital and Dr. Emily Davidson, the director of the Down Syndrome Program at Children's Hospital. They led an interactive discussion on this topic, in which parents talked about the challenging behaviors they're seeing and were able to strategize new approaches with Dr. Baumer and Dr. Davidson. 
 

Save the Date for the next Complex Needs Support Group meeting on Saturday, Feb. 8 at 10 a.m. at Children's Hospital Waltham. 

Share Your K-6 Ed Photos for Publication

 

Do you have an inspiring photo of your loved one with Down syndrome in an educational setting that you're willing to share? 

 

Then send it to us for possible inclusion in our first Educators Manual, to be published early next year. 

 

We need pictures of elementary school children (grades K-6) to bring the manual to life. You're child could be doing virtually anything: reading, writing, working with math problems, at the computer, using an augmentative device, signing, working in a small group, listening to a story, talking to friends, at their kindergarten graduation, doing a presentation, getting on the bus, eating lunch with friends, attending a school assembly, participating in an after-school/extra-curricular event, working on an art project, in music class, on the school playground, in gym class. 

 

Please complete this photo release form for each individual pictured (including your own child, other children, classmates or educators). Email Joshua Komyerov, Communications & Operations Director, with any questions. 

 

Our Education Task Force has been working on the comprehensive Educator's Manual for more than two years. The Manual includes best practices to guide educators in making the accommodations and adaptations necessary to best teach students with Down syndrome. 


MDSC All-Stars Fall to Bruins Alumni (Again)
But Everyone Wins in Annual Grudge Match
  
You have to hand it to the 23 brave souls who dared to take to the ice November 24 against some of greatest hockey players to ever play the sport. 
 
Of course, we're talking about our MDSC All-Stars, who faced off against the Boston Bruins Alumni in our 9th Annual grudge match at the New England Sports Center in Marlboro. 
 
Despite falling 13 to 9, there was no hanging one's head on this day. Both sides - the legends and the regular folks - were all playing for the same cause; the acceptance and inclusion of people with Down syndrome. 

 

 


A Family Affair

Arena #1 on that Sunday afternoon was full of amazing stories that our whole community can be proud of. Among the MDSC players were 4 siblings of people with Down syndrome, 3 uncles or aunts and 7 dads. We've never had so much family representation! 

  

Among them was Nick Cavanna, who raised more than $3,000 to skate in our game for his first time. In the stands was his 7-year-old 
brother Liam, who just finished 3 1/2 years of Leukemia treatment. And to top it all off, Liam was the happiest kid in the building when he won a brand new bike from Belmont Wheelworks in our Silent Auction.  
 

Another sibling, Joe Campagna, was once again our biggest fundraiser. He has been playing in the game since he was 11 years old and has raised an incredible $38,000 to support the MDSC's programs and services. "I do this in honor of my little brother Danny," Joe said of his brother, who just started junior high school this year. "He is such an inspiration to me and everyone that has the pleasure of knowing him."

  

Rob Lucier, another All Star veteran and top fundraiser, had the honor this year of playing on the Bruins side of the ice. In his 6 years on the team, he has raised over $20,000 to support his daughter Jennifer and others around the state with Down syndrome. 

 

4-year-old Halle Prunty had two siblings represented Sunday. Her brother Declan played for the All Stars for the 2nd year. Her sister Kiley, 12, dropped the ceremonial puck at center ice to start the game. Next year, she hopes to play in the game itself!    

 

Another sibling, Zach Rothwell, shone off the ice. During the pregame ceremonies, Zach, a student at Lynnfield Middle School, presented the MDSC with a check for $1,000. Zach and five of his friends had joined forces last year to launch Team Respect, a community project that uses social media to highlight awareness about Down syndrome. For their work, the group won a Youth Advocates of the Year Award from Mass. Advocates for Children. In typical fashion for these remarkable teenagers, they immediately offered to donate their winnings right back to people with Down syndrome. Presenting the check were Zach, Andrew Maglio, Jackie Desautels, Maggie Weaver, and Christina Albano. Thank you Team Respect for being true champions of people with Down syndrome!

 
Self-Advocates Shine  
With open arms and open ears, the Bruins welcomed special guest coach John Dunleavy. John is well known to the MDSC as a member of our Self Advocate Advisory Council. He also happens to be an employee of the Boston Bruins Foundation, which has recognized his leadership skills.

John's enthusiasm was contagious among the B's. He could be heard giving a rousing pep talk before the game. During the game, he was stationed atop his team bench shouting encouragement and directions. And afterwards, at the MDSC's Players Reception, he was asked by Bruins Bob Sweeney and Rick Middleton to coach the team next year as well. John, of course, used the occasion for another inspiring speech for his team.
 

 

Anyone who's ever been to our Annual Hockey game knows that one highlight is when self-advocates take to the red carpet to sing the National Anthem, backed by piped in instrumentation. This year, we tried a new twist. Rising country singer (and Central Mass. native) Shanna Jackman led our Advocates in Motion singers with a rousing rendition.

A Class Act
There is a reason that our Bruins partnership on this event has been going for close to a decade. The Bruins Alumni are a true class act. This was evident again especially during the pregame Free Skate, where Bruins Alumni were all about interacting in meaningful ways with our membership.

Thanks to the Bruins Alumni for their commitment to our cause: Rick Middleton, Shawn Miller (goalie), Terry O'Reilly, Glen Featherstone, Frank Simonetti, Andy Brickley, Bob Beers, Reggie Lemelin, Guy Larose, Bruce Crowder, John Carter, Tim Sweeney, Bob Sweeney, and Tom Songin.

This year, we honored announcer John Horrigan, who has been as central to the success of this event as any of the players. Since its inception, he has been lending his voice and talents to announcing this game with dignity, grace and sensitivity. 

Thanks also to referee Don Garcia and to Rick Cobban, our lovable professional skating clown whose antics keep everyone engaged and laughing. 

 



Educators Forum Returns with a Vengeance
Record Crowd of 350 Educational Professionals

Our Annual Educators Forum returned this year to Holy Cross College for the 9th year with spectacular results, including our biggest crowd ever!

The conference, whose theme was "Designing Classrooms and Programs to Bridge Access to the Common Core Curriculum", drew more than 350 general and special educators, paraprofessionals, administrators, related services providers and other education professionals.

(Last year, the event was supplanted by a one-time event, our Northeast Down Syndrome Education Conference, co-hosted with Down Syndrome Education International.)

We returned to form this year. Participants were treated to a full day of presentations by experts in the field on a range of stimulating workshops that helped bring to life best practices for educating students with Down syndrome.



Educators from throughout Massachusetts and New England packed the auditorium at the Hogan Campus Center, where you could hear a pin drop during the Self-Advocate Keynote Address by Kate Bartlett, a member of our Self-Advocate Advisory Council. Educators were launched into their morning sessions by inclusive educational consultant Dr. Cheryl Jorgensen

Thanks to Kyle Gendron for photographing our event. You can see his photos here. See below for select videos from the event. 

 
New Drug Trial Available on a First-Serve Basis
Testing Effects on Learning, Memory & Language

 

We are pleased to share with you that Dr. Brian Skotko and his research team at the MassGeneral Down Syndrome Program now have many research opportunities for individuals with Down syndrome.  Up until now, opportunities for people with Down syndrome to participate in research have been scant, for a variety of reasons.

 

The doors have now opened to an area many of us never thought possible:  drug trials specifically for people with Down syndrome. Enhancing the well-being of all people with Down syndrome remains the greatest aim of all of these research opportunities.

 

Currently, Dr. Skotko and his research team are conducting a screening protocol for a drug that might improve cognitive capacities in some people with Down syndrome. The purpose of this screening protocol is to identify around 230 people with Down syndrome from around the world who will take part in the full clinical trial next year.  

 

This study is being funded by Hoffman-LaRoche, the maker of the drug in the upcoming study. The upcoming clinical trial will evaluate the effects of their study drug on learning, memory, and language abilities in adults with Down syndrome.

 

The drug company has made available a limited number of spots for each site participating in this study.  MassGeneral Hospital has the ability to enroll up to 33 subjects in this study.  They are screening participants now to determine who will qualify for the drug trial early next year, and eligible patients are screened in the order in which they contact us.  By screening participants now, they also have the opportunity to allow certain patients to participate if they anticipate that they will not meet any of the exclusionary criteria by the start of the drug study.

 

To see if your family member is eligible to take part in the study, please review the questions here. If you would like your family member to participate in this study, or if you 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 [email protected]   

Note:
The Massachusetts Down Syndrome Congress (MDSC) is informing you of this research on behalf of MassGeneral Hospital Down Syndrome Program. 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
State & National Policy Initiatives Ramp Up

  

Walk With Us on Washington  

If you are passionate about advocating for the interests of people with Down syndrome, join us for the NDSS Buddy Walk� on Washington on February 26 to 27, 2014 as we make our presence felt in the nation's capitol. This two-day advocacy event brings together hundreds of people from the Down syndrome community around the country to meet with members of Congress and their staff on Capitol Hill to advance education, research, healthcare and employment opportunities. 

 

MDSC Executive Director Maureen Gallagher and the other members of our delegation meet directly with Bay State lawmakers serving us in Washington and/or their staff members. This is your chance to make a difference in the lives of people with Down syndrome and their families. If you are interested, please contact us at [email protected]. (Please note that the MDSC covers the cost of the registration fees and people pay for their own travel expenses.)

 

Read more about our national advocacy initiatives here.   

  

Reworking Background Check Bill

A broad coalition of disability advocacy groups, headed up by the MDSC, has been working diligently throughout the summer and fall to finalize a reworked draft of one of our priority bills, the National Background Check Bill.  

 

With support from representatives of the Arc of Massachusetts, the Disabled Persons Protection Commission, the Association of Developmental Disabilities Providers, and the Mass. Department of Developmental Services, the MDSC has completed the first draft of the bill which is now under review. Once the bill is finalized, it will go to the Judiciary Committee for approval. We'll keep you posted as the bill progresses.   

 

The redraft has been roughly based on a similar bill that recently passed that requires educators to undergo national checks. We are now planning to get feedback on the complex piece of legislation by the Executive Office of Public Safety and Security, which would largely be responsible for implementing such a bill.    

  

Education Bill Passes  

We are excited to announce that Governor Patrick signed into law one of our support bills, An Act to Maintain Short Term Objectives for Students with Disabilities. 

This new law requires school districts to continue the current practice of including short-term objectives and benchmarks in the IEPs of all students with disabilities. The inclusion of measurable short-term objectives in IEPs is important to assist in measuring the impact of special education services, providing essential information for educators to adjust services and strategies in a timely fashion. 

 

We want to thank the leaders in the State House who are committed to equal opportunities for children with disabilities, starting with this bill's lead sponsors Sen. Cynthia Creem and Rep. Jennifer Benson. If you are in their district, please thank them. 
Old & New Families at Latest New Family Social
Next Gathering Scheduled for Saturday, Jan. 11

 

Four returning families and one new family joined us at our latest New Family Social on Saturday Nov. 16 at the MDSC's Burlington office. The gatherings are an opportunity for parents and other family members to meet other families with children with Down syndrome from birth to 3 years old. Families share resources, connect with each other and with the MDSC. Siblings and grandparents are always welcome, and light refreshments are served.  

 

Thanks to Melanie McLaughlin, Terry/Ann Iandiorio and Regina Kando for hosting, filling in for MDSC Family Support Director Sarah Cullen. Save the date for our first New Family Social of 2014 on January 11. For complete information on New Family Socials, including a flyer, visit here.

 

 

MDSC Parents First Call Program Touches Family in Eastern Europe
 

Late last summer, we were contacted by a couple in Romania who had a little boy with Down syndrome in May 2013. They found the MDSC website and were so grateful for all of the information it provided. The dad emailed and asked if there was any additional information we could send to them, as there are no therapy programs in their city.

 

Our Family Support Director Sarah Cullen was able to send them a number of books, including "Gross Motor Skills for Children with Down Syndrome", "Fine Motor Skills for Children with Down Syndrome", and "Early Communication Skills for Children with Down Syndrome".

 

After receiving the books, the family emailed us again: "Yesterday the postman gave us your package. We are so really happy for all the help," they wrote. "This is the greatest gift for us and every book looks so important. They are great information for us to be informed and to help David as much as we can. I am so lucky that we found MDSC."

 

Since then, the family has kept in touch with us, emailing Sarah pictures and videos of their little guy, and expressing their appreciation for the support and resources that MDSC has provided. They even sent us by airmail a beautiful handwritten letter, and included a donation as a token of their appreciation. 

 

 

 

 

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