3rd Annual Down Syndrome Advocacy Day

Taking the State House by Storm 
June 1, 2016 | No. 47
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For 7th Year, MDSC Lobbies on Capitol Hill 
 
For the 7th consecutive year, the MDSC sent a delegation of advocates to Washington D.C. to lobby for good public policy at the NDSS Buddy Walk on Washington next week. 

Advocates pushed for a new bill, ABLE to Work Act (S2702/HR4795), to amend the federal ABLE Act to raise the annual contribution amount for people with disabilities who have jobs. This new bill was introduced in March.

They also lobbied for the Accurate Education for Prenatal Screenings Act (HR3441) which requires the CDC to create and maintain education programs for patients and health care providers on the purpose of cell-free DNA prenatal screenings, the reasons for such screenings, what conditions may be detected, and the risks and benefits.

This year, more self advocates than ever were among our 15 MDSC representatives. The six self advocates included John Anton of Haverhill, Kate Bartlett of Arlington, Brian Heffernan of Newton, Donna Jay of Salem, Chris May of Newton, and Ned Reichenbach of West Newton. Having a strong representation of self advocates is critical to the success of our lobbying efforts. Legislators appreciate hearing directly from the people in their districts affected most by their funding and policy decisions - and who have the power to vote them out of office if they are not responsive. 

While there, our team of advocates fanned 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. 

Other MDSC advocates included Fran Hogan of Haverhill, Shey Jaboin of Salem, Patricia Jennings of South Boston, Arthur McLaughlin of Hanson and his daughter Christine Chesarek, Laura Noble of Winchester and MDSC staff members Colleen Endres, Maureen Gallagher, Jacquie Sherman and Kristen Tenglin. 

Our self-advocates and family members did an exceptional job sharing their stories, which really
resonated with the legislators and their staff.

To learn more about the MDSC's advocacy efforts in Massachusetts or nationally, visit here.

From Our Affiliates... 

June 19
CELEBRATE FATHER'S DAY WITH DADS AT KIMBALL FARM

Celebrate Father's Day with Dads Appreciating Down Syndrome (D.A.D.S.) at Kimball Farm in Westford. Gather with dozens of DADS/MDSC families for a day that includes a full lunch, ice cream buffet, 2 bumper boat rides, an $8 of arcade games, large bucket of balls for golf driving range, and unlimited use of two 18-hole mini golf courses. Plus lawn games such as sand volleyball, horseshoe and tug of war pits, ring and bean bag toss, Frisbees, and - back by popular demand - a Dunk Tank! Animal Adventure Pass, batting cages and executive golf course available for additional cost. Go here for complete information. DADS is a proud affiliate of the MDSC. 

July 30
DSAC HOLDS CHEESEBURGER IN PARADISE FUNDRAISER 
Join the members of our Down Syndrome Autism Connection for a "Cheeseburger in Paradise" fundraiser to support their programs and services. Saturday, July 30th, 1pm-4pm, Tipsy Seagull (or Tipsy Toboggan if raining), 1 Ferry St, Fall River, MA, $20.00 per ticket. Live music, cash bar, raffles...and lots of fun! For tickets call Charlotte at 978-228-6510 or Karen at 774-526-3634. DSAC is a proud affiliate of the MDSC. 
Corporate Donations
Dunkin' Donuts Gives $10K for First Call 
Thank you to the Northeast Chapter of The Dunkin' Donuts & Baskin-Robbins Community Foundation (DDBRCF) for their generous $10,000 donation to the MDSC to support our First Call Program. 

We were thrilled to do the check presentation at the Dunkin' Donuts store in North Reading!

Pictured (from Left to Right): Dunkin' Donuts Representative, Molly Wiley; Drew Thompson; Dunkin' Donuts Franchisee and MDSC Buddy Walk Family Festival Chairperson, Danielle Thompson; Dunkin' Donuts Franchisee, Mohamed Hiaoui; Dunkin' Donuts Franchisee, Chris Angiolillo; MDSC Development Director, Reaghan Bik.

The MDSC has been very successful in obtaining grants and corporate donations through our members' work at various companies who have community giving programs. You can help the MDSC connect to your employer, too. If you would like to help us raise awareness within your company about the many wonderful programs and services of the MDSC, please contact Reaghan Bik at rbik@mdsc.org.
Fundraising for Down Syndrome
   
Samantha's Harvest 5K

Another opportunity to #Run4DS. Our friends at Samantha's Harvest are hosting their annual 5k Family Walk/Run and a portion of the proceeds go to MDSC programs and services!

The event is June 12 at the RMHS track on Oakland Road in Reading. Registration starts at 9am and the race begins promptly at 10. Register online below. The race will be officially timed, they will have a pacer on a bicycle for the first time and the first male and female finishers in their age groups will receive prizes! Register here. Thanks Samantha's Harvest!


MDSC to Launch Online Auction
The MDSC will be launching it's first-ever online auction in early June with some great items to get as a gift for Father's Day, a summer birthday or just a special treat for yourself. Stay tuned... 
New Family Social This Saturday 
    
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, June 4 from 10 a.m. to Noon at the MDSC offices conference room. Come meet other families and learn more about MDSC and helpful resources. RSVP to Family Support Director Sarah Cullen at scullen@mdsc.org.

Go here for complete information and future dates. 

Get Involved on MDSC Committee/Task Force

 

The MDSC has become one of the strongest Down syndrome organizations in the country because so many of our dedicated parents, professionals, self-advocates and others are involved in helping us to achieve our mission. 

 

You, too, can get involved in so many ways. It takes all of us working together to make the most impact possible. 

   

Join a Committee

Consider joining one of our many Committees or Advisory Councils:

  • Government Affairs Committee
  • Public Awareness Committee
  • AIM Advisory Council
  • First Call Advisory Council
  • Medical & Scientific Advisory Council
  • Buddy Walk Committee
  • Hockey Game Committee
  • Education Task Force
  • Business Advisory Council
  • Diversity Task Force
Go here for more information about each of these opportunities to become involved in a meaningful way to drive our mission and promote the acceptance and inclusion of all individuals with Down syndrome in Massachusetts and beyond. 

Other Ways to Be an Active MDSCer
May 18 was a banner day at the Massachusetts State House for our 3rd Annual Advocacy Day. More than 200 families, loved ones, self advocates and others crammed the Grand Staircase to promote essential funding and policy priorities.

Our self-advocate speakers, Ned Reichenbach, John Anton, Brian Heffernan, and Melissa Reilly - all of whom work in the State House - gave impassioned speeches on the need for our community to be politically involved. Fox25 News Anchor Gene Lavanchy emceed the event with aplomb and a personal touch - his nephew Ben has Down syndrome. 

MDSC Board Chair Steve Narey and MDSC Executive Director Maureen Gallagher, made a strong case for the MA Legislature to support the Organ Transplant Bill, Higher Education Opportunities and funding for students with intellectual and developmental disabilities to attend college, and funding for the MDSC Line-Item, DDS Line-Items, and the UMASS Down Syndrome Clinic Line Item.

We honored outgoing State Representative Tom Sannicandro, Senate President Stan Rosenberg and State Representative Jim Cantwell for their incredible service and enlisted the help of House Speaker Robert A. DeLeo, Senator Jamie Eldridge and MDSC artist Michael Avakian to honor them.

After the formal ceremonies, hundreds of advocates fanned out across the State House to speak personally with their legislators about our priorities.

Media coverage for the event included: 
Check out our photos on Facebook and thanks everyone who came out to make a difference and #TakeAction4DS. 

You can participate in our virtual advocacy day to help us get these policy priorities and funding across the finish line.  Call your State Representative and State Senator today to let them know you support these priorities. If you have any questions, please contact us at timetospeakout@mdsc.org.

"Diversify Your Workforce" Events
MDSC Pilots Regional Forums to Reach Employers

The MDSC and the state's Regional Employment Collaboratives are launching a series of regional workshops around the state to educate employers and human resources professionals on ways to expand their workforce by hiring people with disabilities.

The first two forums are TOMORROW June 2 in Burlington (for North of Boston) and June 9 in Milford (for Central, Mass.), and represent the next phase of the MDSC's Your Next Star public awareness campaign, which has been opening the eyes of employers to the immeasurable value  of people with Down syndrome and other disabilities in the workplace. The forums will continue throughout the fall in other regions of the state, including Greater Boston, South Shore and Cape Cod and Western Massachusetts.

Please help us get the word out to your network or directly to any employers or human resources staff you know. You can share our Facebook post or share our Blog post on LinkedIn.

The "Diversify Your Workforce" events include a mix of experts and "regular" people who will help employers understand how businesses make disability hiring work for them:
  • Model employers like Home Depot, CVS, Mutual of Omaha and Dave & Busters explaining the nuts and bolts of hiring people with disabilities and why it's been good for their business
  • Top disability attorneys speaking to the ins and outs of hiring someone with disabilities
  • State legislators and administration officials explaining the state's efforts to create inclusive workforce environments.
  • Individuals with Down syndrome and other disabilities speaking personally about their own experiences, successes and challenges
BURLINGTON (TOMORROW)
Employers and HR professionals may register here for the June 2 forum at the RJ Kelly office building in Burlington, Mass to reserve a space. Limited space remains.

MILFORD
Employers and HR professionals may register here for the June 9 forum at the Milford National Bank Headquarters

These workshops are free and lunch is provided. Seats are limited for both events.

Make a World of Difference

Take the Buddy Walk Team Captain Challenge 

The Buddy Walk Team Captain Challenge has been extended to June 8! Just sign up your team, raise at least $150 and we'll enter you into a drawing to WIN one of the following prizes:
  • Atomic Bowling Birthday Party at Town Line Bowling (up to 25 guests - includes 1.25 hours of bowling with shoes, pizza, game tokens and table set up with balloons)
  • SkyZone Trampoline park - Jump to your (or your kids') heart's delight with 4 mid-day passes to Westborough, MA location
  • Edaville USA (Carver, MA) - 2 passes for Edaville's famous rides and attractions, shows and events, dining and food and shops.
 
*PLEASE NOTE: registration fee does not count toward the $150 fundraising minimum to be entered into the challenge.

So register now for any walk to not only experience - but also contribute to - the warmth and determination of our community. 

Our Buddy Walk Program is the largest public awareness platform in Massachusetts that promotes acceptance and inclusion of all people with Down syndrome. We're encouraging our teams to sign up early so that our walks will be the most successful ever! 
MDSC Continues to Bolster Education Resources 

This spring we are proud to have hosted two brand new webinars for families and teachers supporting students with Down syndrome in school. And that's just the tip of the iceberg. Check out all the great educational information and resources we have for your below. 

Webinar: Teaching About Differences

Building inclusive classroom cultures where all students are accepted and understood requires thoughtful planning and guided discussion. This session highlights how teachers can facilitate these conversations using children's literature as the platform to sparking deeper reflections about individual differences. Mom and educator Sarah Burton presents "There IS Room on the Broom - Using Children's Literature and Guided Classroom Discussion to Teach About Individual Differences."

Webinar: IEP Development
Last week, Education Director Mo Blazejewski hosted a Webinar for educators titled "IEP Development: Considerations for Effective Advocacy." Coming together with your child's team each year can be both exciting and stressful as you reflect upon your child's progress and plan out for the new areas of focus over the next calendar year. This webinar offer parents information, insight and tips that will lead to more effective communication and advocacy as you come together with your district team to plan for your child's educational needs. Stay tuned to our Facebook or YouTube pages for when this webinar becomes available. 

Educator's Manual - Get Your Copy
The MDSC has a wealth of resources available for both parents and educators. Our book, Meaningful Inclusion for Students with Down Syndrome - a Resource Guide for Elementary Educators continues to be a highly sought after book for families and teachers all across the country. Feedback from parents and teachers has been incredibly positive, noting its breadth of information and highly readable format. Get your copy here! 

Running for Down Syndrome

7 Team MDSC Marathon Runners Power Through 26.2 Miles for Their Loved Ones

120th Boston Marathon 
We are truly grateful and proud of our seven runners who completed the Boston Marathon on Patriots Day: Angel Boisvert, Arie Bram, Stephanie Chiles, Tracey Costantino, Meaghan Melly, Holly Pennell and Andrew Thompson! 

It is inspiring to think of the months upon months of training they endured throughout the winter months all leading up to a 26-mile journey on foot from Hopkinton to Boston on April 18. Their dedication and commitment to raise awareness and funds, and ultimately improve the lives of individuals with Down syndrome is truly inspiring. 

Their efforts help the MDSC continue to grow critical programs like Advocates in Motion, Parents First Call, Public Policy initiatives, the Self-Advocate Advisory Council, the Allen Crocker Self-Advocate Internship, Medical Provider outreach, Public Awareness Campaigns, and our Educator's Forum and Annual Conference.

Special thanks to Mark Hunt of DisabilityImages.com for taking beautiful photos. 

Falmouth Road Race
Apply Now to run the 44th New Balance Falmouth Road Race on August 21... and support people with Down syndrome. Only 10 spots remain!
 
Now is your chance to run this amazing 7-mile course along the pristine Cape Cod coastline. Join the cause for a fun day on the Cape that will make a difference in the lives of people with Down syndrome and their families.   

For more information email MDSC Executive Assistant Jacquie Sherman at race@mdsc.org. Please note that as a participant in the Numbers for Non-Profits program, all MDSC runners use a personal webpage we set up for you to share your story and garner support to reach the $1,200 goal by race day. 

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!

Race for Awareness
If you have another event on your personal "must do" list - be it a marathon, triathlon, swim or bicycle race - you, too, can help the MDSC. Whether the event takes place in Massachusetts, Maine or Mexico, the MDSC will help you directly translate your physical exertion into critical funds and public awareness for Down syndrome. 

Whatever your endurance event, we will set you up with your own personal fundraising page and provide you with a MDSC singlet. To apply or if you have questions, email us at race@mdsc.org. Let the mission of the MDSC be a source of inspiration as you train. When crossing the finish line means having made a difference in the lives of people with Down syndrome, it never felt so good.
Teen & Adult Program Upcoming Events 

June 5 
AIM HANGOUT

JUNE 12
AIM EXTRA
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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.

To RSVP or 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.
Research News
 
The MDSC is committed to ensuring that our membership has information about and access to the latest research opportunities. The MDSC Medical and Scientific Advisory Council, in collaboration with researchers and scientists, selects a number of studies each year that will be made available for voluntary member participation.

Dr. Stein Publishes Book on Behavior
MDSC Medical and Scientific Advisory Council member, David Stein of Boston Children's Hospital's Down Syndrome Program, released a new book: Supporting Positive Behavior in Children and Teens with Down Syndrome, which examines how the brain of a person with Down syndrome works, how those differences impact behavior, and why bad behavior should not be viewed as a willful act. Governed by this new awareness, parents are in a better position to change and manage their child's behavior using 8 guiding principles. Available here through Woodbine House publishers. 

MGH Digs Into Data on Down Syndrome Pregnancies
Medical and Scientific Advisory Council Chair Dr. Brian Skotko of the Massachusetts General Hospital Down Syndrome Clinic and his colleagues Gert de Graaf and Frank Buckley published a research article estimating the number of Down syndrome live births, elective terminations and natural losses in Massachusetts from 1900 to 2010. The study seeks to investigate the influence of elective terminations on the population of children with Down syndrome nationwide following the introduction of cell-free fetal DNA screening in 2011. The results reveal that the estimated birth prevalence of 2010 births with Down syndrome in Massachusetts was slightly lower than the national incidence while the estimated reduction in the number births with Down syndrome as a result of terminations was significantly higher (49%) than the national average (30%). The researchers suggested that the greater frequency of termination might be due to regional differences as well as the increased number of older mothers in Massachusetts, increasing the likelihood of prenatal screening in the state because of a higher chance of pregnancies with Down syndrome. Read more here. 

Milestone Reached in Treating Sleep Apnea for Patients with Down Syndrome
Doctors at Mass Eye & Ear and MGH recently safely and successfully implanted their 6th pediatric hypoglossal nerve stimulator in a child with Down Syndrome and severe obstructive sleep apnea. The success brings to an end the first phase of an FDA approved study, according to Dr. Christopher Hartnick, director of the pediatric otolaryngology division at Mass. Eye and Ear. " Obstructive sleep apnea (OSA) affects up to 60% of children with Down syndrome. If sleep apnea is left untreated, patients could experience cardiovascular issues like high blood pressure and heart disease, occasionally requiring surgical interventions including life-altering tracheostomies in severe circumstance. "The hypoglossal nerve stimulator has the potential to be a game changer for the Down syndrome community," said study co-author Dr. Brian Skotko. Read more here.

MGH to Build "Virtual Clinic" for Patients with Down Syndrome
Massachusetts General Hospital will soon launch the first ever "virtual clinic" for people with Down syndrome in an effort to reach patients who do not have access to local clinics and relieve overwhelmed primary care physicians. "It's really going to transform the way we're able to deliver health care to people with Down syndrome and other disability populations," Dr. Brian Skotko, co-director of the MGH Down Syndrome Program, told the Boston Herald. "The modern day primary care physician maybe only has one or two patients with Down syndrome, and it's unreasonable to expect them to stay up to date on research for the conditions of all of their patients." Skotko and his team received a $2.1 million grant to build the digital health system aimed at addressing the shortage of Down syndrome clinics nationwide. About 58 clinics operate out of 32 states for the roughly 250,000 people living in the United States with the genetic disorder. Read more here. The MDSC is proud to be a collaborator on this project. 

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