MDSC Masthead
February 13, 2016 | No. 45
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Part-time Internship Opportunity at MDSC


The MDSC seeks a Development & Communications Intern in our Burlington office to assist the MDSC on projects and tasks associated with our statewide Buddy Walk Program. The 10-15 hour/week position will help with various fundraising initiatives, public relations activities, and other operational duties related to promoting the acceptance and inclusion of people with Down syndrome.


The intern will be responsible for the following duties: 

  • Assist in developing and implementing new fundraising activities and initiatives
  • Assist in writing articles for the MDSC newsletter, website, and press releases
  • Assist in getting media placements for MDSC stories
  • Assist in developing relationships and partnerships with corporations and foundations
  • Assist in grant research activities
  • Assist in developing marketing campaigns with the goal of recruiting new individuals, groups, and corporate partners to attend and volunteer at upcoming MDSC events/programs
  • Perform other duties as assigned 

For complete information, including application instructions, please see our posting on Idealist.org. 

MDSC-Approved Research Studies

PROJECT PLAY
Project Play seeks to evaluate all children's play as a developmental process across the age span of
8 months to turning 5 years old. They are especially interested in evaluating the play of children with identified delays.

Karin Lifter, Ph.D. and her research team from the Department of Applied 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. Go here for complete information. 

CLINICAL TRIALS FOR KIDS 6-11 WITH DOWN SYNDROME 
Boston Children's Hospital and MassGeneral Hospital are now recruiting children 6 to 11 years old with Down syndrome for a clinical trial sponsored by Roche Pharmaceuticals.

The study looks at the safety and potential effectiveness of an investigational medication that may improve learning, memory and performance of daily activities in children with Down syndrome.

For more information on the Boston Children's Hospital study, go here... For more information on the MassGeneral Hospital study go here.


SLEEP APNEA
Does your son or daughter with Down syndrome have trouble wearing a CPAP mask or have a tracheotomy for the treatment of severe obstructive sleep apnea (OSA)?

Our partners at MassGeneral Hospital's Down Syndrome Program, are doing a research study to see if placing a surgically implanted nerve stimulator, similar to a pacemaker, is safe and effective in relieving airway obstruction during sleep in children with Down syndrome, ages 10-21. This device has already been tested and approved for use in adults with moderate to severe OSA who are unable to use CPAP. 

If you are interested in learning more about this research study, and whether or not you/your child would be an appropriate candidate, please contact the research team by calling Dr. Hartnick at (617) 573-4206 or by email here.

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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. 
Community Fundraisers
  
4TH ANNUAL TROTTIER CHARITY BREAKFAST

Mark your calendars! On March 5, Russ and Kelly Trottier will hold their 4th Annual Charity Breakfast at the Knights of Columbus in Whitinsville. As anyone who has attended knows, it just keeps getting bigger and better and this year will be no exception.

Funds from the event go to support the MDSC and the UMASS Medical Center Down Syndrome Program, which the MDSC advocated for.

Russ and Kelly, whose son Colin was diagnosed with Down syndrome 10 days after birth, note how much the MDSC and the UMass Clinic have meant to their family and others in the Blackstone Valley... "My wife and I were saddened and disappointed at first. We know we need to be our child's biggest advocates, and realize that even we can make a difference within this community. Organizations like the MDSC who advocate and provide the resources and information for families of children and adults with Down syndrome are vital."

Go here for complete information. To volunteer or donate please contact Russ: 

DINNER FUNDRAISER FOR TEAM MDSC AND RONEN GLADSTONE

Get your tickets now for this awesome dinner fundraiser in Westborough for Ronen Gladstone and to support the MDSC. Sapporo is generously donating the venue - even a portion of the bar sales at the end of the night will be donated to the cause!

Ronen's uncle, Arie Bram, will be running the Boston Marathon on April 18 in Ronen's honor as part of Team MDSC. His goal is to raise $10,000 and this event will help him get there.

In addition to some awesome Korean BBQ and sushi, you'll find lots of fun raffle items. Go here for complete information.

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If you'd like to hold your own community fundraiser in your town, we can help. Contact MDSC Development Director Reaghan Bik at rbik@mdsc.org
Parents First Call Program Events
  
February 23
SPANISH LANGUAGE SUPPORT GROUP
Spanish-speaking mothers with a child with Down syndrome aged 10 or younger are invited to join us on February 23 at MGH Chelsea HealthCare Center, 151 Everett Ave, Chelsea. (Por favor, unase a nosotros-un grupo de madres de habla hispana con un hijo/hija con Sindrome de Down de 10 aņos o menos de edad.)
 
April 2
NEW FAMILY SOCIALS 
Siblings and Grandparents invited as well! Families of children with Down syndrome three years old and younger, as well as expectant families, are warmly invited to join MDSC staff and other new families for an informal get-together with light refreshments on Saturday, April 2 from 10 a.m. to Noon at the MDSC offices conference room. Come meet other families and learn more about MDSC and helpful resources. Go here for complete information and future dates. 

March 5
SHARING GROUP FOR MOMS WITH EXTENDED NICU STAYS
For the first time, the MDSC will host a confidential, supportive, facilitated Moms Sharing Group just for MDSC moms whose babies were in the NICU for an extended period of time.
WHEN: Saturday, March 5, 2016 from 10am - noon
WHERE: MDSC, 20 Burlington Mall Road, Burlington, MA (lower level conference room)
RSVP to Sarah Cullen, scullen@mdsc.org or by calling (781) 221-0024 x206

Would it just be helpful to meet and connect with other moms who have had similar experiences in a NICU?
Facilitated by Mary-Frances Garber, MS, CGC, owner of supportive counseling practice, and Peg Ricardo, MDSC mom to Thomas, who was born at 33 weeks and spent 8 weeks in the NICU. See here for more details...

32nd Annual Conference to Bring Together 600 Advocates to Educate & Inspire
 
For the 32nd year, we are proud to host our Annual Conference, bringing together more than 600 self-advocates, parents, grandparents, siblings, educators, and other professionals from across the Northeast to learn from regional and national experts on a spectrum of topics related to Down syndrome. REGISTER NOW!
  • More than two dozen workshops
  • Regional and national experts
  • Awards Luncheon Extravaganza
  • Self Advocate Keynote Address during Awards Luncheon by self advocate entrepreneur Tim Harris
  • Specialized Tracks for Parents, Educators, Self Advocates and Brothers & Sisters 
  • Sessions for Everyone - families of Children 0-5 years old, Children 5-12, Teens, Adults, Individuals with a Dual Diagnosis of Down Syndrome and Autism, and Individuals with Complex Needs
  • Annual Meeting open to the public with the Executive Director and Board of Directors where people will learn about MDSCs new strategic plan 
  • Diversity Breakfast before start of conference for families of diverse backgrounds.  
Sponsor, exhibit or advertise at the MDSC 32nd Annual Conference. To learn more about how you, your company or organization can become a sponsor, click here. For information on exhibiting or advertising at the MDSC 32nd Annual Conference click here.

Participants also gather to share stories, celebrate victories, advocate for acceptance and inclusion, and reunite with other MDSC families. We hope you will join us on March 19th at the DCU Center to promote acceptance and inclusion and celebrate the Down syndrome community.
 


Tim Harris, Self Advocate Restaurant Owner to Deliver Keynote Address at "Believe" Conference
Don't miss the inspiring, educational message of Tim Harris, owner of Tim's Place restaurant on March 19, as he delivers the keynote address at our Annual Conference. 

Tim has been featured:
  • In TIME Magazine, People Magazine and USA Today, and on the Today Show and CNN
  • Honored at the White House by President Obama
  • Launched his own Big Heart Foundation to promote entrepreneurship and inclusion
  • Spoken across the country, inspiring countless other individuals with intellectual disabilities to start their own businesses. 
Tim exemplifies the heart of our "Believe" theme. What does he "Believe"? That anyone, with the right supports, can achieve their dreams. Join Tim on March 19 and join the conversation on Twitter by telling the world what you believe. Use #ibelieve and #Downsyndromeawareness and tag @themdsc. 
2015 Education Award winners Betsy Pelz and Rosalie Forster (flanked by Louise Borke and Stephen Narey)

Deadline Nearing for MDSC Award Nominations
Do You Know Someone Who Deserves Recognition? 
 
Don't miss the opportunity to nominate someone special for an MDSC annual award. The deadline for submission is just around the corner, Feb. 19. The winners will be announced at our 32nd Annual "Believe" Conference on March 19, where they will be publicly recognized. The awards include: 
  • Outstanding Educator Award for an educator in Massachusetts who has significantly contributed to ensuring that students with Down syndrome aregiven every opportunity to maximize their full potential 
  • Media Award for a person or company who exemplifies the MDSC's mission to disseminate up-to-date information about Down syndrome 
  • Allen C. Crocker Award of Excellence, the highest award offered by the MDSC, for the person who most advances the Down syndrome movement.
  • NEW Employer Award for a person or company who recognizes what people with Down syndrome can bring to the workforce and act as role models for other employers to emulate.
     
MDSC to Tackle Public Policy Hurdles on Beacon Hill and Capitol Hill in 2016 - Join Us! 
JOIN THE BUDDY WALK ON WASHINGTON IN APRIL 
For the 7th year, the MDSC will send a delegation of Down syndrome advocates to Washington D.C. to lobby for good public policy at the NDSS Buddy Walk on Washington April 11 and April 12. 

Once again, we expect that more than a dozen representatives from our community will fan out across Capitol Hill to personally meet with the Bay State's 11 congressional leaders and advocate for key policies to enhance the lives of people with Down syndrome. 

Go here for more information about the Buddy Walk on Washington. If you would like to be involved in advocacy efforts closer to home, we're looking for members to join the MDSC's Legislative Advocacy Task Force, and help us map the future of the MDSC's public policy initiatives. 

3RD ANNUAL DOWN SYNDROME ADVOCACY DAY MAY 18
This year, at our 3rd Annual Advocacy Day on May 18, we need your help to raise awareness with your legislators about our two new priority bills as well as critical funding needs. Please Save the Date and plan to join us to make a difference for our new priority bills, other bills on our platform and other disability line items on our legislative platform. 

The MDSC has established itself in recent years as a major player in state disability policy, leading the charge or lending a critical hand to pass key legislation including: 
  • Prenatal Testing Bill
  • Real Lives Bill
  • National Background Check Bill 
This year, our top priority bills are:
  • H. 3271 - An Act Concerning Nondiscrimination in Organ Transplantation, sponsored by Representative James Cantwell, which will prevent discrimination against anyone with an intellectual or developmental disability in need of an organ transplant. 
  • H.1064/S. 672 - An Act Creating Higher Education Opportunities for Students with Intellectual Disabilities, Autism Spectrum Disorders, and other Developmental Disabilities, sponsored by Rep. Tom Sannicandro and Sen. Barbara L'Italien, which will bolster Massachusetts' Inclusive Concurrent Enrollment Initiative (ICEI) to give 18-to 22-year-old students with disabilities higher education opportunities in an inclusive college setting with necessary services and supports.
Our Advocacy Day has been central to bringing our priority bills to the attention of State House leaders and garnering their support. Like the past two years, hundreds of members and supporters of the Down syndrome community will gather on Beacon Hill for a rally and luncheon reception followed by individual meetings with state legislators. Registration opening soon. 

If you are interested in either opportunity, just email timetospeakout@mdsc.org. 
MDSC to Host 3rd Annual Support Group Retreat
Two Dozen Leaders from Across State Bolster Ds Community  
For the past two years, more than two dozen leaders in the Down syndrome community from across the state came together our annual Support Group Leader Retreat, organized by the MDSC. Once again, on Feb. 26-27, our support group leaders will gather to share experiences and expertise and strategize about ways to strengthen the Down syndrome support groups across the state. They will be led by the MDSC's Executive Team, including Executive Director Maureen Gallagher and Family Support Director Sarah Cullen. 

These groups play an integral role on the local level, as it is through these groups that MDSC members are welcomed and supported on a very personal level ~ having the opportunity to meet other families face-to-face, develop meaningful relationships, and share information and resources. The MDSC is proud of the support group leaders we partner with and believe that the retreat was a significant step in collaborating more closely together to best meet the needs of families across the state.

The MDSC is committed to ensuring that families and individuals with Down syndrome have the local supports and resources they need. Toward that end, we appreciate the continued leadership and collaboration of each of these local Support Group Leaders. Their commitment to working with the MDSC and the Down syndrome community across Massachusetts is unparalleled. We are thrilled about the ideas generated as we all work together to achieve our common goals.
 
Other Upcoming MDSC Events 
   
March 9
SECTION 8 AND AFFORDABLE HOUSING OPTIONS
The MDSC, Riverside Community Care and Mass Families Organizing for Change present the latest in our Full Life Ahead Workshop series on Wed., March 9. 

The Section 8 program is one of several affordable housing options available to income eligible applicants. The Section 8 program provides monthly rental assistance which allow households the opportunity to live in safe, decent and affordable housing. Learn more about the program, how to apply and general information about how the program is administered. In addition to the Section 8 program, there are several other affordable housing options such as the Massachusetts Rental Voucher Program (MRVP), the Alternative Housing Voucher Program (AHVP), state and federal public housing and low income tax credit (LITC) units. All of these are options to consider when looking for affordable housing options.

Presenter Susan Nohl, Deputy Director, Metropolitan Boston Housing Partnership The session will be held from 7 to 9 p.m. at the MDSC Office at 20 Burlington Mall Road, Suite 261, Burlington, Mass. Come learn how to build a healthy, vibrant community. Please RSVP to Adrienne Szafranski adrnnszf@aol.com. Space is limited. Complete information here. 
 
Financial Strategies and Transitioning
The MDSC and Boston Children's DS Program are excited to co-host "Financial Strategies and Transitioning" presentation from Attorney Meredith Greene, Leo Rotman, CFP, Financial Adviser and Caleb Harty, Financial Adviser from River Financial Group (www.riverfg.com) on Feb 24th, at 6:30pm. This will take place at the Waltham location of Boston Children's Hospital! Please RSVP to Sarah Cullen at scullen@mdsc.org or 781-221-0024 ext. 206. See flyer here. 
Race for MDSC - Support MDSC Marathon Runners and Join Falmouth Road Race Team

BOSTON MARATHON 
The weather is getting frigid, but for the seven runners on Team MDSC, they don't have a choice - they have to get out and train: 
  • Angel Boisvert
  • Andrew Thompson
  • Holly Pennell
  • Tracy Constantino
  • Stephanie Chiles
  • Arie Bram 
  • Meaghan Melly 

On April 18, these champions will make the epic trek from Hopkinton to Copley Square in the 119th Boston Marathon... and raise funds and awareness for Down syndrome with every step! Go here to learn more about Team MDSC or donate to one of our runners. We are excited to once again be part the John Hancock Non-Profit Marathon Program! 

 
If you're a qualified runner with a race entry bib and would like to join Team MDSC please e-mail race@mdsc.org for more information. 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.  
 
FALMOUTH ROAD RACE
The MDSC is looking for runners to join our team for the Falmouth Road Race. You can run this historic 7-mile race along the pristine Cape Cod coastline for a good cause!  

This year's race is on Sunday, August 21 and the MDSC has 30 numbers. Each of our runners have their own personal stories, but they are united by one common passion: to promote acceptance and inclusion for individuals with Down syndrome and other disabilities. As a registered team member, you are guaranteed an official number in the race, a special MDSC running singlet, an invitation to join us at our pre-race luncheon on the weekend of the race in Falmouth and much more. We also send you some quick and effective tips to raise awareness and funds. Help us make all the work we do at the MDSC possible!

Please note that as a participant in the Numbers for Non-Profits program, all MDSC runners are required to raise $1,000 by race day. Email jsherman@mdsc.org for more information or to join our team! 
Teen & Adult Program Upcoming Events 

March 6-8
ADULT KARAOKE NIGHT
Join Self Advocates 21+ on Saturday, February 27 from 3:00 PM to 5:30 PM at Bentley University, 450 Beaver St, Waltham as the MDSC Self-Advocate Advisory Council (SAAC) invites adults with Down syndrome and their friends (ages 21+) to this fun afternoon event! We'll have karaoke, dancing, light refreshments and fun with friends! RSVP required by February 22nd to mlee@mdsc.org or 781-221-0024 x207. Participation form will be required. See flyer here. 

February 27
GAME NIGHT FOR YOUTHS
New in 2016 are our AIM Saturday Night Socials! These events, held at the Boys & Girls Club in Waltham, include music, dancing, fun and the chance to make new friends! On Saturday, February 27 from 6:30 PM to 8:30 PM the Sat. Night Social will feature a game night! 

See flyer here for more details and contact ktenglin@mdsc.org with questions. 

April 3
HANGOUT FOR YOUTHS
At our Hangouts, Advocates in Motion members continue to explore its curriculum, "Presenting Myself to the World," which focusses on discussing their abilities and potential career paths, creating digital resumes, preparing for interviews and dressing for success.

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 wonderful AIM Parent Facilitator Cathy Polewarczyk.

Join us Sunday, April 3 from 12:30 PM to 3:30 PM at West Suburban YMCA, 276 Church Street, Newton Corner. 

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ADVOCATES IN MOTION
All 13-22 year olds with Down syndrome are invited to join the AIM program so they can attend one or more of these events. Some of these activities have limited enrollment, so email now to join the AIM program. 
SELF ADVOCATE ADVISORY COUNCIL
The SAAC advises the MDSC on issues of importance to young adults and adults with Down syndrome, plans events for adults (including SAAC quarterly socials and workshops) and participates in other MDSC programs.

For more information about AIM or SAAC, contact Colleen Endres, MDSC Teen and Adult Services Director, at cendres@mdsc.org or 781-221-0024 x207.

Call for Photos: What Do You Believe? 

Bring Our 2016 Annual Conference Theme to Life

What do you  for your loved one with Down syndrome?

Send us your photo to believe@mdsc.org and we'll use it to bring this year's Annual Conference theme to life! At the conference, look for your photo on conference banners, brochures, rolling slideshows and our video montage (see last year's)

And join the conversation on Twitter to raise awareness about Down syndrome. Use hashtags #ibelieve and #downsyndromeawareness. Don't forget to tag @themdsc

More about our  theme. 

Every year for the past several years, the MDSC has chosen a theme that represents where our Down syndrome community is, and where we're going. Last year it was "The World Is Ours." In 2014, it was "Champions." And in 2013 "Real Lives."

Now, for 2016, we are proud to announce our new theme - "BELIEVE"!!! The concept of believing relates to virtually everything we do.

We BELIEVE that people with Down syndrome should be allowed to pursue meaningful lives in their communities. We BELIEVE that all aspects of society should accept and include individuals with Down syndrome fully. We BELIEVE that new and expectant parents should have access to the latest, most accurate information about having and raising a child with Down syndrome. We BELIEVE that people with Down syndrome should not be defined by their disabilities, but rather should be celebrated for their abilities.

We BELIEVE that people with Down syndrome deserve every opportunity for an education that truly meets their needs, a good job that allows them to earn money, quality health care that doesn't discriminate and a fulfilling social life. Ultimately, we BELIEVE that each person with Down syndrome should be honored as the individual he or she is and for the immeasurable value they bring to the world.

We BELIEVE in the future of all people with Down syndrome and pledge to do everything in our power to ensure that they have the opportunities they so richly deserve.
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