MDSC Masthead
UpSide Weekly No. 30
Can't Run the Marathon? Run4Cole
Braintree Boutique Helps Ds Community
Members Get Thrill from Circus of the Senses
Be Boston Strong this Marathon Day
Cheer On Team MDSC Marathon Runners
News from Beacon Hill
Save the Date for MDSC Advocacy Day
MDSC Upcoming Events
Special Ed Webinar Series Continues
Research Opportunities
MDSC in the News
Adult Self Advocates Let Loose at Karaoke Night
April 12, 2014 | No. 30
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Can't Run 26.2 Miles? Run4Cole in Clinton 

 

 
If you are not among those superhuman individuals who run the Boston Marathon on Patriots Day, you can still support the MDSC in a more reasonable endeavor. 
 
Run or walk 3.5 miles on Sunday, April 13 in the annual Run4Cole in Clinton, Mass to help Emily LaMarca reach her marathon fundraising goal and enjoy a great family-friendly event. REGISTRATION IS NOW OPEN. This year's race is dedicated to Jeremy Brown, who, along with his dad Stephen braved the chilly temps last year. 
 
The route will start and finish at the Clinton Middle School and will include music by Pat McIntyre, raffles, great friends and FUN! 

Emily will be running the Boston Marathon for the 5th year in honor of her 7-year-old son Cole and so many inspiring people who just happen to have Down syndrome. 

 

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. 

Braintree Boutique Helps Ds Community
 

 

Be sure to stop over at Bradbury's Boutique on Elm St. in Braintree on Sunday April 27 from 10-4. 
 
They will be holding a fundraiser with at least 10 percent of sales going to support the MDSC and our programs. Special thanks to owner Pat Bradbury.

 

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. 

Members Get Thrill at 'Senses' Circus

 

The Big Apple Circus' "Circus of the Senses" - the show designed specifically for people with disabilities - returned again for its annual show in at Boston City Hall Plaza. Once again the MDSC was there. As you can see from the photos, everyone had a ball! 

 

Thanks to Marc Epstein for securing and sharing complimentary tickets for years as he has done for years. Also, thanks to Russ Trottier for stepping up to help get everyone their tickets in a jam. See more photos on our Facebook page.

Be 'Down Syndrome Strong' this Patriots Day
Support our Team MDSC Marathon Runners

 

In just 10 days, 10 dedicated runners will start their journey in Hopkinton and cross the finish line 26.2 miles later in Boston to make a difference in the lives of people with Down syndrome. These runners have spent the last several months working hard to train and generate significant awareness. They need our support and encouragement now and on Marathon Monday April 21!

 

The MDSC's Champions! theme this year could not be more applicable than it is to our Marathon runners.  Some are beginners and have worked tirelessly to prepare for the prestigious Boston Marathon. Some are returning from last year - runners whose chances to complete the race were dashed by the horrific events at the finish line - and are preparing for the many emotions they will encounter along the route. 

 

One runner, Emily LaMarca, is a mom to Cole, who has Down syndrome, and is running on Team MDSC for the 5th year! Another runner, Jim Wagoner, is traveling cross-country from California so that he can push his son and his jogger (more than double his weight). Our runners all have different stories, but they are united by one common passion: to promote acceptance and inclusion for individuals with Down syndrome and other disabilities.

  

Team MDSC 2014

Ivana Culic

Sharlene Grant

Emily LaMarca

Sarah McKitterick

Josefina Oliva

Kari Olsen

Holly Salegna

Alan Siegel

Andrew Thompson

Jim & Colby Wagoner

 

Help these Champions reach their goals!

Donate $26.20 to a runner's efforts and MDSC Board members will match your gift between now and April 21. There is no better way to pay tribute to Boston Strong this year than to show your support for our runners by donating to their efforts.  Each of them has set a personal fundraising goal and could really use your help so they can achieve and surpass their goal. Donate below. 

 

Cheer On Team MDSC Marathon Runners
Join us at the 118th Boston Marathon April 21st at 12:00pm

 

 

 

Returning runners always say our cheering section is what pushes them to reach that finish line.  The MDSC Cheering Section is just before Heartbreak Hill on Commonwealth Avenue opposite Chesterfield Road in West Newton where there is a nice grassy area. See an interactive map here or click image above.

 

Most of our runners will be arriving at the cheering section between 1pm and 4pm, but we encourage members to arrive no later than noon. The cheering section will be set up earlier if you choose to arrive in the morning. The earlier you go, the easier it will be to find parking and make your way to the cheering section. 

 

We encourage you to take advantage of Public Transportation. Our cheering section is a 15 minute walk from the Woodland Station stop on the Green Line's 'D' Train.  An MDSC representative will be present at the cheering section and will have posters for you to decorate, pom-poms, noise-makers, and other items to keep the runners motivated. We encourage spectators to bring blankets and a picnic lunch to enjoy with your friends!

 

If you and your families are planning to attend to cheer on our runners, please email Becca Canavan at bcanavan@mdsc.org.  We hope to see you there... We want to have a huge crowd this year!

NEWS FROM BEACON HILL

   

Funding for MDSC Included in House Committee Budget

After many months of continuing to build strong relationships on Beacon Hill, we were pleasethat the Mass. House Ways & Means Committee's budget blueprint release this week includecritical funding for the MDSC's programs and services. 

 

We are grateful to Ways & Means Chairman Brian Dempsey for his leadership of the Committee. If you are in Rep. Dempsey's district in Haverhill, please thank him for his support. 617-722-2990 or Brian.Dempsey@mahouse.gov After many months of continuing to build strong relationships on Beacon Hill, we were pleased that the Mass. House Ways & Means Committee's budget blueprint release this week include  
 
The state budget process is a long one and we still have a long way to go before final funding for the MDSC from the state for fiscal year 2015 is secured. Our focus now moves to the Senate Budget, which will be released later this spring. Stay tuned as we will keep you updated on how you can help us with this important advocacy effort. 
 
Call to Support a National Background Check Bill in Massachusetts
Key Legislation is Stuck in Joint Judiciary Committee

We still need your help calling your state House and Senate members and asking them to encourage the Joint Judiciary Committee to vote the National Background Check Bill out of

Representatives from the MDSC, The Arc, ADDP, DPPC,
DLC MDDC and DDS at a recent meeting

committee favorably. A new and improved bill crafted by the MDSC and a broad coalition of disability advocates (was submitted a few weeks ago to the Judiciary Committee, where the bill now stands. 

  

It's urgent that all MDSC members call their state legislators to let them know how important this bill is to you and the Down syndrome community. Go here to find your state legislators and their contact info. Here's what you can say: "Please ask the Judiciary Committee to favorably vote out 'An Act to Require National Background Checks' (H.1674)" 

Note: If you are a constituent of Senate President Therese Murray, House Speaker Robert DeLeo or any of Judiciary Committee members, it is especially important that you call them. See here for judiciary committee members.

  

Support Disability Amendment to State Budget Line Items
Take Action to Contact Your House Member Today

Chairman Brian Dempsey and the Ways/Means Committee this week released a 2015 budget that is supportive of disability services. This includes funding of Family Support/Respite with $2.5 Million, additional funding for other accounts such as transportation and day/employment and a specific reference in the language to DDS's new employment initiative, which it funded with $1 million. Thank you Chairman Dempsey and the Committee. 

 

However, there are several shortfalls and we will be joining our partners at The Arc and ADDP in supporting several amendments. This includes: An amendment by Rep. Sannicandro to match the $4.5 million for DDS' Employment Pilot Program that Gov. Patrick proposed in his budget; An amendment by Rep. Brodeur to restore $3 million to DDS Residential services account to fully fund rate increases; An amendment for additional Turning 22 funding to provide supports for students transitioning from a school setting to "the real world". Please take action to support these amendments to bolster services that help so many of our loved ones with Down syndrome.   


SAVE THE DATE: MDSC Advocacy Day Tues. May 27

 

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. Registration will open soon. 

MDSC UPCOMING EVENTS 

   

The Road Forward: DDS and Chapter 688 Transitional Services 
Wednesday, April 30, 7 p.m. MDSC Office Conference Room, Burlington
Join us at our next Full Life Ahead Workshop in collaboration with Mass Families Organizing for Change on Wednesday, April 30 where we will cover "The Road Forward: DDS and Chapter 688 Transitional Services for Massachusetts Families." 
 
The current number of young adults Turning 22 who are eligible for Department of Developmental (DDS) services is 804-strong. Two hundred forty of those are identified as needing community-based residential services. 
 
Come learn about T22 transitional services, how state dollars are allocated and the process to access these supports.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. RSVP to Susan Nadworny at snadworny@riversidecc.org. Space is limited. 
 
D.A.D.S. Mass Father's Night Out
Wednesday, April 30, 7 p.m., Beer Works, Framingham
Our DADS affiliate has a ton of activities coming up this spring and summer... starting with their yearly meeting fe aturing Dr. Brian Skotko on Wed. April 30 at 7pm (you might remember that it was snowed out TWICE this winter! ) It will be at Framingham Beer Works (348 Cochituate Rd. Framingham, Ma). RSVP's are required by Friday, April 11 (please contact Jeff Roback at dadsmass@yahoo.com). Cost per person is $20 and includes appetizers and dinner. A cash bar will be available. Dr. Brian Skotko is a Board-certified medical geneticist and Co-Director of the Down Syndrome Program at Massachusetts General Hospital. Unrelated to our special guest will be a general discussion concerning the use of the "R" word and its implications and impacts on our little community. 
 
New Family Social 
Saturday, May 3, 10 a.m. to Noon, MDSC Office, Burlington
Join us for our next New Family Social on May 3 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. To RSVP or for more information, email Family Support Director Sarah Cullen at scullen@mdsc.org 

Education Director Demystifies MCAS-Alt in Webinar

Veteran Educator Explains Challenging, Intimidating Topic

 

At the MDSC, we understand that navigating your child's educational maze is hard, and you need help. That's why we recently launched a Special Education Webinar Series to address challenging topics in the field of disability education. 

 

In the second of our series of Education Webinars, MDSC Education Director Mo Blazejewski took on what can be an intimidating subject for parents: MCAS-Alt: Demystifying the Portfolio. 

 

Blazejewski, a veteran educator with more than 17 years of experience in the field, covers the process that a school-based team goes through in order to create a student's alternate assessment portfolio. She looks at the specific guidelines related to the Massachusetts Curriculum Frameworks (Incorporating the Common Core Standards) and discusses how an assessment portfolio differs from a progress portfolio in the classroom. See the session below. 

 

See here for the archive the first workshop, How to Work Effectively with Your IEP team. 

 

MCAS-Alt: Demystifying the Portfolio - An MDSC Education Webinar
MCAS-Alt: Demystifying the Portfolio - 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.  

   

Weight Loss Study for Teens with Intellectual Disabilities

NIH-funded study dubbed "Health U."

Health U. is a weight loss study for overweight teens and young adults ages 15-22 who have an intellectual disab ility. The study is funded by the National Institute of Health (NIH) through the Shriver Center at UMass Medical School.  Eligible participants will take part in a program that includes weekly to biweekly group and individual sessions focusing on losing weight through healthy eating and increasing physical activity in ways that are fun and achievable. Parents receive training on supportive behavioral techniques to encourage their son/daughter to meet nutrition and physical activity goals. Sessions are 90 minutes, highly interactive, and led by nutritionists and lifestyle coaches. Classes begin in April 2014 and are held on either Tuesday or Thursday 7:00pm - 8:30pm.  Qualified participants may be eligible for compensation. For more information, please contact Judith Ellen, Research Coordinator at 774-455-6540 or email healthu@umassmed.edu. To learn more, click here for a brochure

  

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 IN THE NEWS

  

The MDSC was featured in many media stories over the past month. Here is a small sampling: 

  • Fresno's Jim Wagoner, son Colby off to make difference at Boston Marathon (Fresno Bee) Read more... 
  • Newton North Boys Basketball Coach Honored as Educator of the Year (Newton Tab) Read more...
  • Down Syndrome Conference Touts 'Champions' (Worcester Telegram) Read more...
  • MDSC 'Champions' Featured on WGBH Digital Mural (WGBH) Read more...
  • Gendron to Receive Media Award from Down syndrome Organization (Burlington Patch) Read more...
  • Fresno Dad Pushing Disabled Son in Boston Marathon (FOX 26 Fresno) Read more...
  • Nope, it's not the Marathon yet, Zakim to glow blue and yellow for Down syndrome (Boston Globe) Read more...
  • Zakim Bridge to be lit symbolic colors of Down syndrome on World Awareness Day (Globe Newswire) Read more...
  • Parents of Children with Down syndrome support each other through First Call program (Hartford Courant)  Read more...
Go here to see the Press Page of our website. 
Adult Self Advocates Let Loose at Karaoke Night
SAAC Holds 1st Ever Quarterly Social with Karaoke Night

  

 

 

The MDSC Self-Advocate Advisory Council (SAAC) hosted its first quarterly social for adults at Bentley University on Saturday, April 5th. The event, an evening of dinner and karaoke, was held in collaboration with the Best Buddies Chapter at Bentley University. More than 50 adults with Down syndrome and other disabilities, Bentley college students, and MDSC staff came together for ballads, pop songs, and a group rendition of Neil Diamond's classic Sweet Caroline (see video below). Special thanks to our friend DJ Dan'O for his continued support of our self-advocate programs!


Sweet Caroline by MDSC Self Advocate Advisory Council (Karaoke rendition)
Sweet Caroline by MDSC Self Advocate Advisory Council (Karaoke rendition)

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