October 2019
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Run the 2020 Boston Marathon on Team MDSC

The Massachusetts Down Syndrome Congress is proud to be an official Partner of John Hancock in the Marathon Non-Profit Program. The Non-Profit Program provides over 1000 Boston Marathon® bibs to select non-profit organizations throughout the community, which provides organizations with a significant fundraising opportunity.

Race date
Patriot's Day 
Monday April 20, 2020

Apply below and check the status that applies to you. 

Research Opportunities

MDSC is dedicated to ensuring that all members have information about and access to the latest research opportunities.  The Medical and Scientific Advisory Council (MSAC), in collaboration with researchers and scientists, selects a number of studies each year that will be made available for member participation if they desire to become involved. 

Infant Screening Project
Boston Children's Hospital Down Syndrome Program and the Boston Children's Hospital Laboratories of Cognitive Neuroscience has an exciting new research opportunity called the Infant Screening Project.

The purpose of this research is to better understand early language and social communication development in children with Down syndrome by using developmental and behavioral assessments and brain activity (EEG) measurements.

To be eligible for participation, they are looking for children with Down syndrome/Trisomy 21 who are between 12-36 months of age.

The study will require you to come into lab for ONE visit, which will last about 3 hours long, and then to go home with a special device that will record your child's speech samples for 16 hours.

If you are interested in participating or would like to learn more, please contact the researchers by emailing here or calling 617-919-6809.  Go to our Researchers page for full information. 

Longitudinal Investigation for Enhancing Down Syndrome Research (LIFE-DSR) 

Longitudinal Investigation for Enhancing Down Syndrome Research (LIFE-DSR)

Do you have a loved one with Down syndrome who is over the age of 25? Or are you a person with Down syndrome over the age of 25? Recruitment is now open at Massachusetts General Hospital in Boston, MA for the Longitudinal Investigation For the Enhancement of Down Syndrome Research (LIFE-DSR) study - the first study run in the Down Syndrome Clinical Trial Network (DS-CTN). The study is expected to complete in 2021.

The LIFE-DSR study is an observational investigation with the goal to better understand the cognitive and behavioral changes along with the health issues found in adults with Down syndrome as they progress toward Alzheimer's disease.

The study is recruiting adults 25 years of age or older and each participant will undergo a baseline evaluation followed by a 1-year then a 2-year follow-up visit. Each participant will undergo a routine health exam including blood collection and will take cognitive and behavioral evaluations at each visit.

The MDSC respects each individual's right to determine for himself or herself whether or not to participate in any research opportunity. At no time does the MDSC sell or share your contact information with researchers. Only if you choose to contact us will your identity become known to us. The MDSC will not be informed by the researchers on 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 th at you receive from the MDSC.
Upcoming Support Group Programs

Special Health Care Needs 
The MDSC is proud to continue our collaboration with the Down Syndrome Program at Boston Children's Hospital for our "Families of Children with Down syndrome and Special Health Care Needs" Support Group. All family members welcome as volunteers available for children's recreation and support.

December 14 
Boston Children's Hospital Waltham 
9 Hope Ave. 
Waltham, MA

TOPIC: "Self-Care for Parents/Caregivers"

All are welcome! Please note - This is an RSVP EVENT ONLY *RSVP to JDoherty@mdsc.org*. Childcare is limited and is by RSVP ONLY

Come help us learn how to best support your needs, network with other families, share resources, and meet staff from both MDSC and the Children's Hospital Down Syndrome Program at our Families of Children with Down syndrome and Special Health Care Needs Support Group

Refreshments will be served (please let us know with RSVP if you need gluten free or other dietary accommodations).

New Family Social

Mark your calendar for our next New Family Social

Saturday, December 7 
12:30 - 2:30 
(NOTE:  Change of time)
20 Burlington Mall Road, 
Burlington, MA 
our driveway is directly across from the Burlington Marriott -park behind building, enter through main door for #20, elevator on right down to lower level, down hall for meeting area

Families of children with Down syndrome three years old (up to 4th birthdays) and younger, as well as expectant families, are warmly invited to join us for the informal get-together with light refreshments! 

RSVP by messaging Katy Newman at knewman@mdsc.org or Sarah Cullen at scullen@mdsc.org.

Our regular New Family Socials are opportunities for new families to meet each other for an informal get-together with light refreshments! Come learn how other families do it and find out more about the MDSC and our helpful resources.

Spanish-Speaking Group
For parents of children 10 years old and younger (co-hosted with MGH Down Syndrome Program)

Tuesday, Nov 26 from
12 - 1:30 
MGH Chelsea Health Center
151 Everett Ave, Chelsea, MA 02150

Por favor RESERVE vía correo electrónico con Bonnie Fishman,  bfishman@partners.org o llame a 617-887-3817

Down Syndrome & Mental Health
The MDSC is offering a quarterly support group for family members who have a loved one with Down syndrome and a mental health diagnosis. Meetings will be facilitated by Mary-Frances Garber, a licensed genetic counselor providing supportive genetic counseling in her private practice, Listening, Reflecting, Healing in Needham. She has been a consultant with the MDSC for the past 5 years providing insight and support to many families.

If your teen or adult loved one with Down syndrome also has a mental health diagnosis such as Depression, Anxiety, Obsessive-Compulsive Disorder or Bipolar Disorder, join our Mental Health Support Group. 

Wednesday, November 6
MDSC Office, 
20 Burlington Mall Road, 
Suite 261, 
Burlington, MA 02803
RSVP to Colleen at cendres@mdsc.org if interested

Please note that individualized psychiatric treatment will not be provided at this meeting. This meeting is meant to serve as a venue for families with loved ones with Down syndrome and mental health concerns so that they may obtain mutual support with professional supervision.
'A Full Life Ahead' continues in 2019-2020
The MDSC, in partnership with Mass Families Organizing for Change (MFOFC) and Riverside Community Care, hosts the 'A Full Life Ahead' workshop series throughout the year. 

Workshops cover transition, employment, housing, relationships, and other topics that will lead to interdependent, full lives in the community. 

2019-2020 Dates:
November 13
March 11
April 8
May 13

Our next workshop on Nov. 13 at 7 pm at MDSC office in Burlington. RSVP to sara@massfamilies.org
Governor Baker Takes Buddy Walk by Storm; Event Raises Awareness & Funds for MDSC Programs

Governor Baker Pledges Support for Down Syndrome Community 
For the second time in three years, Governor Charlie Baker, a steadfast supporter of our Down syndrome community, attended our 23rd Annual Buddy Walk & Family Festival during the heart of Down Syndrome Awareness Month in Massachusetts and throughout the country. 

On a beautiful, sunny day at Lake Quannapowitt in Wakefield, the event brought together more than 4,000 people for the largest gathering of the Down syndrome community in New England. 

Governor Baker has helped propel Massachusetts to the fore of inclusive, forward-thinking disability policies and programs, including the Organ Transplant Bill, additional funding for the Turning 22 transition program, funding for critical MDSC programs and bringing ABLE accounts to Massachusetts. This year, he signed the best budget for people with disabilities in recent memory.

"I hope we can continue to build on the great success we've had here in Massachusetts to create great lives, great opportunities, and hope and possibility" for our loved ones with Down syndrome, the Governor said. 

Buddy Walk Teams Lead the Charge

All of our Buddy Walk teams were amazing this year and MDSC truly could not do the good work we do without all of their support.  So thank you to everyone who walked, made or donation, or supported one of our many teams!

On stage at the Buddy Walk, we were thrilled to recognize this year's top 5 teams!

1st - Matthew's Troops , led by Danielle and Anthony DeCotis
2nd - Taylan's Troopers, led by Eric Getkin and  Ozge Cagsal-Getkin 
3rd - Mighty McDs, led by Mike and Cara McDonough
4th - Team Mia, led by Leah and Matt Campbell
5th - Charli's Angels, led by Denise and Bill Rothwell 

Congratulations everyone! To see the full list of teams, visit our fundraising platform here, where donations are still being accepted.  

Special thanks to all our sponsors, including our Event Sponsors M&T Bank and Boston25 News and our Gold Sponsors Clear Channel Outdoor and McGee Plumbing & Heating. See all our Buddy Walk sponsors here. 

Self Advocates Take Center Stage

We were excited at our 23rd Buddy Walk & Family Festival to spotlight many Self Advocate Presenters on stage. 

Molly Adams recited beautifully the lyrics to the Irving Berlin classic "How Deep is the Ocean (How High Is the Sky)" while Graham Campbell played the piece movingly on piano.  Kate Bartlett and Ned Reichenbach spoke about their invaluable experience in the competitive workforce and introduced Governor Charlie Baker. And Anna Tabasky and Lucy Falcone presented two of our special guests - singer Laurie Berkner and emcee Vanessa Welch - with flowers as a thank you for their participation in our walk. 

For more photos of the day from our amazing Buddy Walk photographers, be sure to visit our MDSC Facebook page.
State & National Public Policy Updates 

'Workability' Subcommittee Holds First Hearing

John Dunleavy and Molly Adams offered compelling testimony at the  Massachusetts State House Wednesday for the Legislature's "Workability" subcommittee, a newly formed body headed by Rep. Josh Cutler. The committee is considering steps the state can take to facilitate real employment opportunities for people with disabilities.

John and Molly, who were representing MDSC's Self Advocate Advisory Council, shared their personal work experiences including at their current jobs ( TD Garden for John;  Walgreens for Molly).

They strongly encouraged the committee and legislature to support MDSC's priority bill, the Higher Education Bill, which will allow more people with disabilities to attend college and from there, enter the workforce.

We were thrilled to see other members of our MDSC family participating, including  Brian Heffernan, who works at the State House, and from  Verc EnterprisesNicole Coppens and CEO Leo Vercollone.

MDSC's Anton to Address Subminimum Wage Issue on Capitol Hill 
John Anton
MDSC Legislative Specialist and NDSS Ambassador John Anton will testify next month at a US Commission on Civil Rights briefing to advocate for fair pay for people with disabilities. John, along with MDSC Executive Director Maureen Gallagher, will travel to Washington, D.C. for the public hearing on Capitol Hill, officially titled, Subminimum Wages: Impacts on the Civil Rights of People with Disabilities.

The Nov. 15 hearing will examine the exemption under the Fair Labor Standards Act that permits employers to pay less than the minimum wage to individuals with disabilities. In April 2018, the U.S. Department of Labor reported that more than 1,800 employers held a waiver of minimum wage requirements, affecting at least some 150,000 workers. Reliable reports indicate that many employers with such certificates pay far below prevailing or minimum wage while segregating these employees from the non-disabled workforce. The Commission will investigate whether this violates the civil rights of people with disabilities.

Commissioners will hear from former governor and Homeland Security Secretary Tom Ridge, advocates and civil society organizations, academic and legal experts, and corporate officials. John has a wealth of experience in public policy on the state and national level, as well as in the workforce. We are proud to have him represent the MDSC, the NDSS, and the Down Syndrome community through his testimony.
Face Off Against Bruins Greats at MDSC's 15th Annual Charity Hockey Benefit Game 

DON'T MISS the chance of a lifetime!  Skate with Boston Bruins Legends and make your sports fantasy come true at the 15th Annual Bruins Alumni Charity Hockey Benefit (Admit it! You've always wondered what would happen if you had the chance to skate against the best.)

A few spots remain -- this is your chance to join our team, play against Boston Bruins Alumni and raise money for MDSC's critical programs. Th e Boston Bruins Alumni team, stacked with Bruins legends like Rick "Nifty" Middleton, Bob Sweeney, Ken Hodge and Frank Simonetti,* will take to the ice against the underdog MDSC All Stars on November 24, 2019 at the New England Sports Center in Marlborough. 

All players** will receive a MDSC All-Star hockey shirt and 25 complimentary tickets for their family and friends to attend the game.  A fundraising minimum is required and you'll have your own personal fundraising page to make it easy.  

*Bruins Alumni Team roster not finalized until two weeks before the game*
**Players of all skill levels welcome**

Sponsored by

Education Updates 

15th Annual Educators Forum Nov. 7

Register now for the MDSC 15th Annual Educators Forum!  "Shaping an Inclusive Future for Students, Schools, and Communities"

The Massachusetts Down Syndrome Congress recognizes that supporting students with complex learning profiles requires training and professional support for teachers and administrators. This year's conference is designed to provide teachers with practical workshops that will support professionals who are working hard each day to meet the educational needs of students. 

Thursday, November 7, 2019
The College of the Holy Cross - Hogan Conference Center
Worcester, MA

Other topics include: behavior, reading comprehension, writing, friendship, differentiated instruction, augmentative or alternative communication, executive functioning, universal design for learning, mathematics, and college-based transition services. 

Upcoming Webinar! Tech Tips 101: Getting Started with Using Google Extensions and Tools to Support Access to Curriculum

The MDSC, in collaboration with The 3-21 Foundation, is pleased to offer an education webinar. 

Tuesday, October 29, 2019

The educational technology landscape is incredibly vast, and for many teachers (and parents!) it feels overwhelming to even THINK about where to begin utilizing the tools available to support students. This webinar is designed to get you started with some easy, high leverage tips and strategies using Google tools and extensions in order to differentiate lessons and modify general curriculum.  

Presented by Maureen Blazejewski, Parent Educator/Educational Consultant, 3-21 Foundation

We will explore ways that Google Slides can be your most versatile classroom tool.  We will look deeply at a few Google Extensions that can be your best friend when it comes to curriculum modification. Finally, Maureen will share some of her favorite online resources for identifying materials to support curriculum access.  

Family Gathering Brings Together Southeastern Massachusetts Community

We were thrilled to host a family gathering for our Southeastern MA families on Saturday, October 19th at Camp Lyndon in Sandwich. 

Marie Younger Blackburn perhaps summed it up best, 'From newborns to college students, we just had a good time eating, decorating pumpkins and sharing our experiences and resources. We made new friends and reunited with old friends. We are excited about how far we have come and look to the future of inclusion and acceptance because we are awesome!'

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