***** UpSide Weekly No. 39*****

Get Tix to Celebrate Down Syndrome at Fenway April 28

On Tuesday April 28, the MDSC and the Boston Red Sox will team up to celebrate individuals with Down syndrome and MDSC volunteers.

The Sox will honor two amazing families on field during the pre-game ceremonies - Jan Tobin, Larry Bartlett and family; and Marie and Henry Rej and family.

We have a limited number of fee-free tickets available for the game so that our community can celebrate together.

Tickets are $21 (Limit of 6 per family). Game starts at 6:10, but plan to be in your seats by 5:45 for pre-game ceremonies. Go here to purchase your tickets.

Allen Crocker Self Advocate Intern Gets to Work for MDSC

Ned Reichenbach of Newton has begun serving as the MDSC's second Allen Crocker Self Advocate Intern. Ned, who gave the keynote address at the MDSC's 2012 Annual Conference, will concentrate on legislation and public policy as well as public speaking during his internship.

Ned will also be attending the Buddy Walk on Washington in our nation's capitol, where he will lobby members of Congress on disability policy.

Ned is pictured above on his first day on the job going over legislative material with former Crocker Intern and MDSC Advocacy Specialist John Anton. Welcome Ned!

Recent Events

DSAIA LEADERSHIP CONFERENCE

Three MDSC Management Team members attended the Down Syndrome Affiliates in Action Annual Leadership Conference in March

Executive Director Maureen Gallagher presented on "Why Public Advocacy is So Important." Family Support Director Sarah Cullen presented on "Comprehensive & Reliable Support at Diagnosis." Gallagher and Cullen co-presented on "Enhancing Your First Call Program to Serve Families with a Prenatal Diagnosis." Director of Communications Josh Komyerov presented on "How to Communicate Your Biggest Stories."

Through sharing information and best practices with other Down syndrome organizations, the MDSC is helping build a stronger national movement to enhance the lives of all people with Down syndrome.

NEW FAMILY SOCIAL

There were lots of smiles and laughs at our April New Family Social, where we saw many familiar faces and a couple of new ones. We were visited by photographer Catherine Maranian, who clearly relished taking pictures of individuals with Down syndrome. No matter what the babies and toddlers were wearing, said MDSC Program Specialist Mychelle Lee, "their super cute faces were modelicious," Stay tuned to our Facebook page for those photos when they're available.

Go here to learn more about our regular New Family Socials.

CIRCUS OF THE SENSES

One hundred and fifty members of our community had the time of their lives on March 27 at Boston City Hall Plaza.

Thanks to Marc Epstein of our D.A.D.S. affiliate, they enjoyed a unique showing of The Big Apple Circus called "Circus of the Senses", which is designed for children with physical and intellectual disabilities!

Thank you Marc for everything you do for our community! See more photos here.

BRUINS 50/50 RAFFLE NIGHT

On March 7, the MDSC and the Boston Bruins continued our partnership at a 50/50 raffle night during a Bruins game.

World famous fist-bumper Liam Fitzgerald made a special appearance at the Boston Bruins vs. Philadelphia Flyers game to help raise awareness and funds to support Down syndrome.

One lucky winner took home half of the $24,000 raised at the event. The other half goes to benefit MDSC programs and services. Learn more about our Boston Bruins Partnership here.

Research Study on Tongue Pacemaker System

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

Drs. Hartnick, Diercks, Keamy, Kinane, Schwartz, and Skotko at Massachusetts General Hospital and Massachusetts Eye and Ear Infirmary 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 12-21.

This device has already been tested and approved for use in adults with moderate to severe obstructive sleep apnea. 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

Please note: The Massachusetts Down Syndrome Congress (MDSC) is informing you of this research on behalf of Mass General Hospital Down Syndrome Program. 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.

D.A.D.S. Group to Gather in late May and early June

Dads Appreciating Down Syndrome (D.A.D.S.), an MDSC affiliate, are gathering twice, in late April and early May.

Their next monthly meeting will be Monday, April 27 at 7pm at the West Street Tavern in Needham. Municipal parking is available. As always, appetizers are on D.A.D.S. RSVP to Jeff Roback at dadsmass@yahoo.com

On Friday, May 1, D.A.D.S. will have a special "Dads Night Out", featuring dinner and bowling at Kings Bowl America in Dedham. Includes 2.5 hours of bowling, shoe rentals, appetizers and 5 pizzas. Cost is $20. RSVP to Jeff Roback at dadsmass@yahoo.com.

Also Save the Dates: D.A.D.S. will return to Kimball Farm on Father's Day, June 21, for its annual outing and its annual golf outing is slated for July 6.

Study Offers Accurate Data About Down Syndrome Births

How many children with Down syndrome have been born in the U.S. over the past century? This basic question and others about Down syndrome pregnancies and births have never received close scrutiny until now.

Renowned Down syndrome researchers Gert de Graaf, Frank Buckley, and Brian Skotko have taken up the subject and delved into the data a newly published research paper in the American Journal of Medical Genetics, Part A.

Titled "Estimates of the Live Births, Natural Losses, and Elective Terminations With Down Syndrome in the United States," the paper can be accessed in its entirety here.

This new research will help the MDSC assess the future education, outreach and programming needs for our First Call and Medical Provider Outreach Programs. With accurate data about our community, we will better be able to measure the effectiveness of our advocacy and programming.

Running for Down Syndrome

Team MDSC Marathon Runners Need Your Support

119th Boston Marathon

We are proud to once again participate in the historic Boston Marathon as part of the John Hancock Non-Profit Marathon Program. Team MDSC, made up of seven remarkable individuals, will embark from Hopkinton on April 20 for the 119th Boston Marathon. They will travel an incredible 26 miles by foot, all to raise awareness and funds for our loved ones with Down syndrome.

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.

Each of our 7 runners (plus one honorary team member), has set a personal fundraising goal. They need your help to achieve and surpass their goal by race day. Each of these champions have their own personal stories, which you can read here, but they are united by one common passion: to promote acceptance and inclusion for individuals with Down syndrome and other disabilities.

Our team includes John Clarke, Edward Hulton, Andrew Thompson, Ryan Trott, Evelyn Porter, Lisa Tulloch, Lisa Adelman, and honorary team member Emily LaMara. Meghan McAuliffe and Katie Meola are joining in on the marathon weekend excitement by running the BAA 5k race on Saturday, April 18 for the MDSC.

Returning runners always say our cheering section, on Commonwealth Ave. in West Newton, just before Heartbreak Hill, is what pushes them to reach that finish line. See here for MDSC Cheering Section details. We hope you will join us.

Whether you can cheer our runners on in person or make a donation, we hope you can support them as they make a difference in the lives of people with Down syndrome. Go Team MDSC!

Falmouth Road Race

Apply now to run the 43rd New Balance Falmouth Road Race on August 16... and support people with Down syndrome. Only 20 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 are required to raise $1,000 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!

The World Is Ours

31st Conference Educates, Celebrates our Community

On March 28, we welcomed more than 500 people to the DCU for our 31st Annual Conference. Our theme this year is "The World Is Ours," and our conference seemed to leave no doubt that for people with Down syndrome in our community, this couldn't be more true.

At more than two dozen sessions throughout the day, attendees took away invaluable information from experts in their fields around the country. Tracks specifically served educators, siblings, self advocates and parents of children with a dual diagnosis. Grandparents, families of diverse backgrounds and new families were all able to connect, learn and network.

Our self advocates, as usual, stole the show. Four of our members opened the awards luncheon by telling the audience why "the world is theirs." Daniel Kinchla said it in English; Elizabeth Zamudio in Spanish; Tara Toussaint with an assistive communication device and Amy Polewarcyzk in English and sign language.

Five more self advocates - Nicole Coppens, Phil Donahue, Melissa Reilly, John Dunleavy and Lina Gutierrez - were featured in our Your Next Star employment video, which was previewed at the conference before the official rollout of the public awareness campaign later this year.

Our keynote address was anchored by Naia Fairchild, the 16-year-old from Charlottesville, Virginia, whose family was the subject of countless newspaper articles, television programs and a book back when Naia was born. At our conference, her mom Tierney talked about their journey and Naia demonstrated that she's grown into a strong, confident, capable teenager.

Three self advocates - Chris May, Michael Avakian and Tucker Collins - were among the exhibitors selling their photos or paintings. And the photos that you submitted of your loved ones provided the material for our official World Is Ours slideshow (left) that bookended the awards luncheon.

During the awards luncheon, we honored the incredible commitment of those in our community who have gone above and beyond to achieve our mission. WBZ-TV anchor Jonathan Elias took home the Media Award. Betsy Pelz and Rosalie Forster won the Educator Award for their work on our recently published education manual. Francisco Zamudio, Shey Jaboin and Roxanne Hoke Chandler won the Allen Crocker Award of Excellence - our most prestigious award - for their work outreaching to families of diverse backgrounds. Kerri & Jon Tabasky and Sohail & Mona Masood won our Leadership Awards.

In the early morning of the conference Executive Director Maureen Gallagher presented our 2014 Annual Report at our Annual Meeting. We also said a fond farewell to outgoing board members John Nadworny and Beverly Beckham and inaugurated new board members Dave Falcone and Bill Fitzgerald. We thank all our board members for their service and commitment.

Finally, we couldn't have had a successful conference without your participation and the participation of all our exhibitors and sponsors. Our sponsors were the Mass. Department of Developmental Services, Seven Hills Foundation and the Guild for Human Services. A special thanks as well to our volunteer photographers John Crookes, Melanie Perkins McLaughlin, Mary Ellen McDonough and Geof Simons. Check out their photos on our Facebook page.

Public Policy

Registration Open for 2nd Advocacy Day at State House

Registration is now open for the MDSC's 2nd Annual Down Syndrome Advocacy Day on June, 4 at the State House. Like last year's inaugural event, hundreds of members and

supporters of the Down syndrome community will once again gather on Beacon Hill for a rally and luncheon reception followed by individual meetings with state legislators.

A big part of our legislative success in recent years has been your involvement - reaching out to connect with your legislators to share your personal stories. Last year's event was a great success, as evidenced by the passage of our top priority bills in the following months. Family members, friends and all supporters are welcome to this second annual event!

Four Self Advocates Join National Buddy Walk on Washington

For the 6th consecutive year, the MDSC will send a delegation of advocates to Washington D.C. to lobby for good public policy at the NDSS Buddy Walk on Washington next week. Eleven MDSC representatives from our community will once again 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.

Among our delegation are four self advocates, Chris May, Kate Bartlett, Ned Reichenbach, and John Anton. Chris is a policy junkie who watches C-Span in his spare time. It will be his first trip to the Buddy Walk on Washington. For Kate, it will be her second year lobbying on Capitol Hill. Ned is going as part of his service as the MDSC's Allen Crocker Self Advocate Intern. John is a veteran policy advocate who interned on Capitol Hill last year and works at the State House for Rep. Tom Sannicandro. He serves as the MDSC's Advocacy Specialist.

While there, our team of advocates will send a strong message of advocacy from the Down syndrome community about important national policy priorities. We are tasked with establishing and building relationships with policy makers, connecting with other Down syndrome advocates from around the country, and educating elected officials about the strengths and needs of their constituents with Down syndrome.

Annual Golf Tournament Hosted by our Business Advisory Council

8th Annual Event Includes Chance for Million Dollar Shot

On Monday, June 1, join MDSC self advocates and other dignitaries at ITG Canada's 8th Annual Corporate Golf Tournament benefiting the MDSC.

The event will once again be held at the exclusive Turner Hill Country Club, an award-winning, 18-hole championship course.

"Hole-in-one" prizes and "nearest the pin" prizes are available on all par 3's. There is also a putting event that could net you $2,500. One lucky person will have a chance at a 165-yard shot to win $1 million!

There are a limited number of foursomes and spots are filling up quickly. Minimum sponsorship for a foursome is $2400 ($600 per golfer), which includes lunch, dinner, open bar, awards, gift bag and a round of golf.

Golfers can make a personal contribution and/or raise money through a personal fundraising page available to you. Contact Becca Canavan at bcanavan@mdsc.org or 781-221-0024 ext. 205 with any questions.

Participation in the Annual Golf-a-Thon directly impacts the programs and services provided by the MDSC. The Business Advisory Council is especially focused on employment opportunities for individuals with Down syndrome. Some of the proceeds will go directly toward funding the MDSC Allen Crocker Self Advocate Internship Program.

Advocates in Motion

AIM Program Plans for a Sunday That Lives Up to Its Name

Members of our AIM: Teen & Young Adult Program gather Sunday to celebrate the sunshine!

The Massachusetts Down Syndrome Congress' AIM: Teen and Young Adult Program is for youth ages 13 to 22 and their families. They get together during the school year to have fun, meet peers, and learn new things! Contact Teen & Adult Services Director Colleen Endres for more information at cendres@mdsc.org.

Education Webinars

MDSC Expands Library of Interactive Resources for Parents & Educators Alike

MDSC Education Director Mo Blazejewski has conducted a series of webinars to help parents understand and work with their children's schools in the interest of getting the best education possible for their children with Down syndrome or other intellectual disabilities.

Now, Mo, a veteran educator herself, has started to fill the MDSC's interactive library with helpful resources just for educators. Last week, she conducted her second in a series of professional development webinars aimed squarely at educators. Titled "Curriculum Adaptions & Modifications - Where to Begin," the webinar, like her previous webinars, is available on the MDSC's YouTube page.

Her previous educator-focussed webinar was titled, "Supporting Students: Finding Time to Collaborate & Coordinate." Other parent-focussed webinars include, "How to Work Effectively with Your IEP Team," "MCAS-Alt: Demystifying the Portfolio", and "Springtime Strategies to Support a Smooth Fall Transition."

All of these webinars are available on a special playlist on our YouTube page.

INFORMATION	PARTICIPATE	SUPPORT US	RESOURCES
About the MDSC	Attend an Event	Donate Now	New Parents
About Down Syndrome	Host a Fundraiser	Memorial/ Tribute Gifts	Expectant Parents
Programs	Advocate	Corporate Partnerships	Support Groups
Legislative Platform	Stay Connected	Sponsorships	Educators
	Volunteer	Circle of Giving Society	Self-Advocates