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The UpSide Special Edition
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MDSC Leaders Gather in Washington D.C. for first-ever #NDSSsummit
Marking the beginning of
Down Syndrome Awareness Month and National Disability Employment Month, our partners at the
National Down Syndrome Society are holding their first-ever Capitol Hill Summit in Washington, D.C. this week. The MDSC and the Commonwealth were well represented with a strong contingent who are participating in NDSS's campaign to End #LawSyndrome.
The MDSC contingent includes Fran Hogan, John Anton, Collette Divitto, Blake Divitto, Rosemary Alfredo, Marla Murasko, Paula and Tucker Collins and MDSC Executive Director Maureen Gallagher. The 3-day summit included a trip to Gettysburg where leaders from across the country participated in experiences aimed at building the strength of the Down syndrome community across the nation to tackle the difficult challenges ahead. On the final day of the summit the army of leaders fanned out on Capitol Hill to meet with legislators. Our MA contingent met with our state legislators, including Congressmen Joe Kennedy III, Congressman Jim McGovern, Senator Elizabeth Warren, and staff from Senator Markey and representatives Moulton, Lynch, and Tsongas' offices, as well as Congresswoman Cathy McMorris Rodgers of Washington, who has a child with Down syndrome and co-leads the Congressional Task Force on Down Syndrome.
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21st Anniversary Walk Holds Special Meaning in Down Syndrome Community
On Sunday, October 8th, more than 3,500 family members, friends and people with Down syndrome will gather at Lake Quannapowitt in Wakefield to celebrate, promote acceptance and inclusion, and look to a bright future for the Down syndrome community in Massachusetts
 October is National Down Syndrome Awareness Month, and thousands will come together on Wakefield Common at the Buddy Walk & Family Festival, the biggest gathering of the Down syndrome community in New England. This year marks 21 years of the Wakefield walk and the Buddy Walk Program in Massachusetts.
The 21st Anniversary holds special meaning for the Down syndrome community because Down syndrome is characterized by having 3 copies of the 21st chromosome.
We are thrilled to announce that Governor Charlie Baker (left) will join our 21st Anniversary Buddy Walk & Family Festival on Sunday! Gov. Baker will help us celebrate Down Syndrome Awareness Month by welcoming walkers and speaking about the many contributions people with Down syndrome make to the community.
Helping us celebrate this occasion, the MDSC welcomes back to the Buddy Walk stage
Rachel Coleman of Signing Time. The renowned show, which teachers kids American Sign Language in a fun, interactive way, was a staple on PBS and Nick Jr. Boston25 News Anchor Heather Hegedus will emcee. The event also includes a 21st Anniversary Dance Party, Dave & Busters Fun Patrol, complimentary snacks and refreshments, arts and crafts, balloon artists, face painting, and much more family-fun activities!
The centerpiece of the day is the celebratory three-mile walk around the picturesque lake that is expected to raise about $400,000 to directly support vital MDSC programs and services, including Parents First Call, Advocates in Motion (AIM), Self Advocate Advisory Council, Educator's Forum, Annual Conference, Your Next Star employment campaign, and Legislative Advocacy efforts, all of which help the MDSC ensure individuals with Down syndrome are valued, included, and given opportunities to pursue fulfilling lives in the community.
#CountUsIn
Our theme is year is #CountMeIn, signifying the inclusive nature of our community and our hopes for an inclusive world. Our community includes individuals with the full spectrum of interests and abilities, people of all different cultures and backgrounds, individuals with unique viewpoints and personalities. What ties us together is that all people with Down syndrome and their families want to be COUNTED and deserve to be INCLUDED. So COUNT US IN!
Join the festivities on Oct. 8. You can Start a Team, Support a Walker, or Become a Virtual Walker....
Pre-register by midnight Thursday
for discounted registration costs and a guaranteed t-shirt.
T-shirts for walk-ins only as supplies last
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Collette Named 'Your Next Star' Ambassador
Collettey's Cookies and the MDSC's Your Next Star initiative have formed a new partnership!
For the next year, Collette will serve as the MDSC's first Your Next Star Ambassador, helping the innovative employment initiative reach an even broader audience. For the past two years,
Your Next Star, has been opening the eyes of employers to the power of people with Down syndrome in the work place.
Collette, after being rejected from every job she applied for simply because she has Down syndrome, started her own cookie business in the North End. She had already built a successful business, and then her story went viral. Now, she's filling 4,000 orders a week and speaking around the country.
The MDSC is also launching an entrepreneur component of Your Next Star to give individuals with Down syndrome and their families the tools and confidence to forge their own paths when appropriate. Collette, with her own experience as a successful entrepreneur, will be a powerful spokesperson and face of this aspect of the Your Next Star campaign.
Together, Collette and Your Next Star will be helping employers and the general public understand the incredible value that people with Down syndrome and other disabilities can have for all companies.
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Job Seekers Gain Skills at MDSC/PwC Series
Over two weekends in September, PricewaterhouseCoopers and the MDSC's Your Next Star program teamed up for a series to help job seekers learn about the steps to apply for a job and craft or enhance a resume.
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New Family Socials October 14, Dec. 2
Join us at our next New Family Social on Oct. 14 from 10 a.m. to Noon at the MDSC office building at 20 Burlington Mall Road, Burlington, MA.
Our bi-monthly Socials are for children 3 and under and their families. We will once come together for informal support, networking and, of course, treats. And mark your calendar for our fall Social on December 2.
Email Family Support Director Sarah Cullen at [email protected] to RSVP or with questions.
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MDSC/MFOFC Full Life Ahead Transition Series
The MDSC, in partnership with Mass Families Organizing for Change (MFOFC), is pleased to offer
A Full Life Ahead
: workshops for parents and guardians on
transition, employment, housing, relationships, and other topics that will lead to interdependent, full lives in the community.
Mark your calendars for our first two sessions and RSVP to O. Sophia Johansson at [email protected].
Wednesday, October 11,
7-9pm, Burlington
Healthcare Coverage for Adults with Disabilities
Speaker - Amy K. Weinstock, Director of the Autism Insurance Resource Center at UMASS Medical School's Eunice Kennedy Shriver Center
Wednesday, November 8, 7-9pm, Burlington
Tips and Tools for Job Seekers
Speaker - Jennifer Campbell, CESP, Staff Development Coordinator for New England Business Associates (NEBA)
Join us for these Wednesday evening programs in Lower Level conference room of the MDSC office building in Burlington, MA to learn about transition about transition, employment, housing, relationships, and other topics that will lead to interdependent, full lives in the community. Other dates include:
- February 14, 2018
- March 14, 2018
- April 11, 2018
- May 9, 2018
This workshop series is presented by Massachusetts Families Organizing for Change in partnership with Massachusetts Down Syndrome Congress.
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DSAC Invites All Families to Join Them
Down Syndrome-Autism Connection
The DSAC invites all families affected by Down syndrome and autism, including families who recently got an autism diagnosis, to join them. DSAC has a variety of supports, including the group's monthly family support "chats", which are held the 2nd Monday of every month from 8:30 - 10pm. To be added to the invitation list, please send your email address to
[email protected].
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Enrollment Open for MGH 'Down Syndrome Clinic to You' Study
Researchers at Massachusetts General Hospital invite caregivers of individuals with Down syndrome, ages 1 and older, to consider "Down Syndrome Clinic to You." This is a research study aimed at improving access to health care and overall wellness. This study is done entirely online and at home! To learn more please go here. The MDSC is proud to be consulting on this project critical to providing better healthcare outcomes for all patients with Down syndrome no matter where they live.
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Crocker Intern Gaining Skills in Office Setting
Leia Brown, the MDSC's latest Allen Crocker Self Advocate Intern has been hard at work on projects preparing her to reach her goal of working an office job.
Working hand-in-hand with Membership Services Director Kristen Tenglin, Leia has been helping the MDSC Management Team prepare for events like the Falmouth Road Race and the Buddy Walks.
Leia has been a presenter at the National Down Syndrome Congress (NDSC) conference for over ten years, speaking on eating healthy, staying active, and being positive.
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Self Advocate Advisory Council Announces 2017-2018 Programming for Adults
The MDSC Self Advocate Advisory Council (SAAC) is excited to announce our
schedule of events for the upcoming year. The SAAC will continue to host quarterly socials, and are also opening up some of their SAAC meetings to allow more peers to get involved.
A completed registration form is required to participate in SAAC events.
You can access the form
here or by contacting Colleen Endres, MDSC Teen & Adult Services Director, at [email protected] or 781-221-0024 x207. We hope to seen you soon!
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Save the Date
Saturday, April 28, 2018
MDSC's 2nd conference for adults and family members featuring keynote speaker Dr. Dennis McGuire
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Registration Open for 13th Annual Educator's Forum - focus on Creating Inclusive Education
Registration is now open for the MDSC's 13th Annual Educators Forum. The theme of this year's event is
"Best Practices in Inclusive Education - Preparing ALL Students for a Fulfilling Future."
College of the Holy Cross - Hogan Campus Center
Tuesday, November 14, 2017
8:00 AM - 3:00 PM
Keynote Speaker: Dr. David A. Koppenhaver
Dr. Koppenhaver is a Professor of Reading Education and Special Education at Appalachian State University. He earned a Ph.D. in curriculum and instruction in 1991 from the University of North Carolina at Chapel Hill. He holds NC teaching certification in Reading K-12, Middle Grades Language Arts (Grades 6-9), Intermediate (Grades 4-6), and Elementary Education (Grades K-6). His research focuses on literacy in children with significant disabilities including autism spectrum disorders, intellectual disabilities, complex communication needs, and multiple disabilities. In 1990 he co-founded the Center for Literacy and Disability Studies at UNC and in 2002 was a Fulbright Scholar at the University of Queensland in Australia. His current research projects include the development of an emergent literacy program for students with significant disabilities and a study of reading comprehension in students with Down syndrome.
Other Topics at our Educators Forum Include:
- Lifting the Veil on Transition Planning
- Developing Independence - Strategies for the Classroom
- Updates from The Massachusetts Department of Elementary and Secondary Education: The eIEP, LEAP, SSIP, and Upcoming Changes to the Coordinated Review Process
- Collaborating with Educators - A Parent Perspective Panel
- When A+B=4! Supporting Young Children with Intellectual and Developmental Disabilities in Learning Math Concepts
- Integrated Reading and Writing Instructional Practices that Support Language Comprehension Growth
- Challenging Assumptions - Reframing our Expectations for the Future of our Students
- Stop Dreading That Meeting! Strategies for IEP Planning
- Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don't React Method
- Proximity of Support: Strategies and Practical Applications for Paraprofessionals
Sessions for: General and Special Educators PK-12 , Paraprofessionals, Administrators, Related Service Providers and other Education Professionals, and Family Members.
See the full Program Agenda
here
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P
arents First Call Hosts Sign Language Workshop and Single Mom's Group
The MDSC's Parents First Call Program has an action-packed Fall ahead, with gatherings to meet the needs of all our members. Already, on September 23, a new South Shore Play Group met and on September 26, the MDSC and MGH Down Syndrome Program co-hosted a Spanish group for families with children from 0-10. See below for upcoming events:
Baby Sign Language
Saturday, October 21 from 10 - 12
Boston Children's Hospital - WALTHAM location
9 Hope Avenue, Waltham -Conference rooms A/B on 1st floor
Back by popular demand, Lane Rebelo, LCSW, Tiny Signs Founder, will be leading this workshop! Lane is a licensed social worker and worked for many years with families in the Boston area. She holds a Master's degree in Clinical Social Work from Boston College, and is an award-winning baby sign language instructor. Lane began studying American Sign Language in 2006 after having her first baby and was amazed by all she had to say. She lives with her husband and two daughters in MetroWest Boston.
RSVP REQUIRED (limited space)
Please RSVP to Sarah Cullen at
[email protected] or Angela Lombardo at [email protected]
Single Moms Group
 The MDSC is hosting our first Single Moms Social for moms with kids with Down syndrome 0-10 years old. Join us Saturday, November 18 in the lower conference room of our MDSC office building at 20 Burlington Mall Road, Burlington, MA 01803.
- play time & crafts
- light breakfast & coffee
- meet other single moms from our area!
- adult-led activities for kids provided so moms can talk
Look for information on upcoming New Family Socials and Complex Needs Support Group elsewhere in this newsletter.
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Advocates in Motion Launches 2017-2018 Year With Much More in Store
Our signature Advocates in Motion (AIM) Program launched its 2017-2018 season last weekend at the YMCA, exploring the theme for the year, Together we CAN! AIM members will
gather throughout the school year to
get out into the community, work as a team, and learn about the many ways to contribute and make the world a better place!
AIM Hangouts
AIM Hangouts take place one Sunday afternoon each month at the YMCA in Newton. While youth meet for fun games and learning activities, parents have an opportunity to network and learn from an expert speaker in the field of transition. AIM Parent meetings are held in a different room of the YMCA and are coordinated by our AIM Parent Facilitator Cathy Polewarczyk. Upcoming dates include:
November 5, December 3, January 7, February 4, April 8, May 6, June 3.
AIM Socials
AIM Socials take place on a Friday evening, Saturday or Sunday each month at various locations. We're excited to partner with our friends at Emarc for the Halloween Costume Dance in October, and we've got other great outings in the works! We will keep you posted as we fill in the other dates.
Registration for the year is $175. Scholarships are available. See
here for a flyer with complete information.
The MDSC's AIM: Teen and Young Adult Program provides fun, inclusive, interactive events each month during the school year for people with Down syndrome aged 13-22. AIM participants develop leadership and self-advocacy skills, form meaningful relationships with peers, and build their self-confidence in an encouraging environment. AIM also provides community service opportunities and encourages social relationships between youth with and without Down syndrome.
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MDSC Partners with Statewide Employment Groups on Disability Hiring Forum at PwC
The MDSC is proud to partner with Work Without Limits and the Greater Boston Employment Collaborative on a forum at PricewaterhouseCoopers to educate and engage with employers about the benefits of hiring people with Down syndrome and other disabilities.
If you know an employer who may be interested, you can download and share with them
this flyer.
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ATTENTION BOSTON AREA EMPLOYERS
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For the 13th year, the Boston Bruins Alumni will take on the MDSC All Star team on Sunday, November 19, 2017!
All players will receive an 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.
Just imagine taking a pass from Reggie Lemelin, crossing center ice with the puck and trying to decide whether to pass to Ray Bourque, Glen Featherstone, Andy Brickley, or Bob Beers. That could be you!
Click
here
to purchase tickets, sponsor a player, or make a general donation.
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MDSC Celebrates 5th Annual Down Syndrome Awareness Night at Fenway Park
Our community celebrated the 5th Annual Down Syndrome Awareness Night at Fenway on September 27 during the pre-game ceremonies of the Red Sox vs. Blue Jays. More than 100 members of our community were in the audience as we honored three individuals/families for their support of the MDSC mission and our community:
- For the past 16 years, Samantha's Harvest, founded by Lisa and Rob Gibbs and named after their daughter Samantha, has been funding programs and organizations that enhance the lives of individuals with Down syndrome, including the MDSC.
- Danielle Thomspon of Westford has been a leader in the Down syndrome community since her son, Drew, was born almost five years ago. She has chaired two Buddy Walks and raised more than $100,000 for the cause.
- Collette Divitto of Boston was rejected from every job she applied for, but she refused to give up. Instead, Collette started her own cookie business in the North End. Now, she's filling 4,000 orders a week and garnering national attention. Collette was joined by her mom Rosemary and sister Blake.
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MDSC Continues Fruitful Collaboration with Boston Children's Hospital with "Special Health Care Needs" Support Group
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. The group, which is open to the public already met in September, and will
gather again Saturday, December 16, 2017 from 10am - Noon at Boston Children Hospital's WALTHAM location at
9 Hope Avenue, Waltham - Conference Room A (FREE parking). Children are welcome - volunteers are available for children's recreation and support.
Refreshments will be served (please let us know with RSVP if you need gluten free or other dietary accommodations).
RSVP to Jeanne Doherty at 978-761-3950 or [email protected] with the names of each person who will be attending and whether or not you are bringing your child (limited child care available).
See a flyer with complete information here.
More on the Down Syndrome Program at Children's Hospital
 The Down Syndrome Program at Boston Children's Hospital was founded in 1967 and is one of the oldest and largest of its kind, offering multidisciplinary health care for individuals with Down syndrome from birth to age 22 years. They offer highly specialized medical services and provide individualized management of complex challenges for patients with Down syndrome through an interdisciplinary clinical approach. Their team works closely with expert subspecialists at Boston Children's Hospital. They provide family support services and care coordination to meet the comprehensive needs of our patients. They have developed innovative practices, including extensive neurodevelopmental and behavioral assessments and carefully designed neuropsychological testing that allow us to target and individualize developmental therapies and educational interventions for our patients in order to optimize development.
Prenatal Consultations
Confidential prenatal consultations are provided in our Advanced Fetal Care Center for families who receive a confirmed or suspected prenatal diagnosis of Down syndrome. Consultation with genetics, cardiology including fetal echocardiogram, neurology, lactation support, and other subspecialists can be coordinated.
Clinic Visits
Their team provides a comprehensive interdisciplinary evaluation for babies and young children, using an interdisciplinary team approach. Each child spends a full morning in our clinic and has individual appointments with specialists in developmental behavioral pediatrics, nutrition, audiology, physical therapy, and speech language pathology with expertise in feeding and swallowing. Clinic visits for older children, adolescents, and young adults are customized, with consultation with a clinician in the Down syndrome program coordinated with same-day appointments for other subspecialty care such as orthodontics, audiology / ENT, cardiology, GI / nutrition, ophthalmology, sleep medicine, physical therapy, dentistry, nutrition, and others as needed.
Additional Supports: More than a Clinic
The Down Syndrome Program at Boston Children's Hospital offers families supports beyond their clinics including expert intensive care coordination, resource specialist services, workshops, and support groups. They host the Allen C. Crocker Speaker Series which offers free presentations / webinars by experts in the field on more than 30 topics for families which are archived on our website and viewed by families and professionals nationally and internationally.
Research
In partnership with the Laboratories for Cognitive Neuroscience and the Translational Neuroscience Center at Boston Children's Hospital, The Down Syndrome Program at Boston Children's Hospital offers cutting-edge research dedicated to studying neurodevelopment in Down syndrome, co-occurring medical and neurodevelopmental conditions, and interventions to improve development, cognition, and overall health outcomes.
For more information
Visit Boston Children's Hospital Down Syndrome Program or initiate an appointment by calling 857-218-4329 or email Angela Lombardo. You can also read more in their Program Brochure.
More information on each of Massachusetts' Down Syndrome Clinics
here.
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Marlborough. Just
