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Living His Real Life & "Blogging All About It"
MDSC Advocacy Specialist John Anton is in Washington D.C. living out a lifelong dream, advocating for disability policy at the highest level of government... and he's blogging all about it. Visit his blog here.
Today, John was mentioned and pictured in an extensive story in the Cincinnati newspaper about self-advocate Teddy Kremer, who was Speaker John Boehner's special guest at the President's State of the Union address. According to the story: "The group included John Anton, a 47-year-old Statehouse worker from Boston who was spending a month working in the D.C. office of House representative Cathy McMorris Rodgers (R-Washington). Anton spoke eloquently of his support for a legislative bill called ABLE (Achieving a Better Life Experience)." See that story here.
In less than two weeks down there, he ran into Congresswoman Michele Bachmann out a dinner one night (photo below), hung out with a self-advocate who was about to be Speaker John Boenher's guest for the State of the Union, met with the lobbyist for the Special Olympics to discuss the ABLE Act and, just before leaving, gave the closing remarks at NDSS's Annual Gala in New York City.
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Show Us What "Real Life" With DS Looks Like
For our upcoming "Real Life" Conference, we're collecting photos of you or your loved one with Down syndrome living their "Real Life." We will showcase the photos at our Real Lives conference and online for the world to see.
You could call it an "action shot," but it doesn't need to be athletic It's whatever living a "Real Life" means to you Dancing? Drawing? Voting? Singing? Climbing? Working, like Alison Cohen above? You name it!
Send your photos to RealLives@mdsc.org or message us on Facebook. Include a sentence or two about the "Real Life" depicted in the image. Images must be minimum 100KB. DEADLINE FEB. 28th
For complete information and to register, go to the Annual Conference page of our website.
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On March 2, Russ and Kelly Trottier are hosting their first-ever breakfast fundraiser at the Knights of Columbus in Whitinsville.
Proceeds from the breakfast will go to the MDSC and the Criterion Valley Early Intervention Program of Whitinsville. The Trottiers plan to make this an annual event. Thanks for all your hard work Russ and Kelly.
Admission is free, though donations of any amount are welcome. A group of dedicated volunteers will be serving breakfast and selling raffles tickets. In order to put on this event, the Trottiers are seeking any donated food and raffle items, however modest.
See the Facebook Events posting for complete details
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Annual Conference Registration Open
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Complete Northeast Down Syndrome Ed Conference Archives Available Online
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Key State & Federal Disability Bills Filed
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Sponsor Rep. Tom Sannicandro on the Real Lives Bill
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ABLE Act Re-Introduced; Only 2 MA Lawmakers on Board The Achieving a Better Life Experience (ABLE) Act was introduced yesterday in the 113th Congress by a set of bipartisan, bicameral members of Congress, including 59 original House cosponsors and 16 original Senate cosponsors. Unfortunately, this includes just two members of the Massachusetts delegation: Congresswoman Niki Tsongas, and Congressman Jim McGovern (pictured below). If you are in their districts, please thank them for their support (use links above).  By the end of last session, we  had gotten all 11 members of the Mass. delegation to sign on, a huge accomplishment. Now, we must start from scratch, with both old and new members. This includes Sen. Elizabeth Warren, Rep. Joseph Kennedy III and interim Sen. William "Mo" Cowan until he is replaced June 25. Please take 5 minutes to ask your Senator and Representative to do the right thing by using the Action Center of our national partner, the NDSS. TAKE ACTION NOW Congresswoman Cathy McMorris Rodgers (R-WA), the mom of a child with special needs and Co-Chair of the Congressional Down Syndrome Caucus, described precisely why this bill has been the MDSC's top federal legislative priority: "When my son Cole was born, my husband and I were advised not to put any assets in Cole's name because it would penalize him if he needed to qualify for a government program someday. There are millions of other parents in this same situation. They would like to help their children improve their quality of life without jeopardizing their access to benefits. That's why we need the ABLE Act. This common-sense bill would allow parents to save for their children's futures and give kids with disabilities a chance to live the American Dream." During our Buddy Walk on Washington, March 13 and 14, we will be meeting with all the members of the Massachusetts Congressional delegation and asking for their support. We will keep you updated.
115 Co-Sponsors Sign On to 'Real Lives Bill'
The Real Lives Bill is so important for the MDSC, and people with Down syndrome and other disabilities that our Annual Conference theme, Boston Marathon Team, and our Advocacy Specialist's Blog all bear its name.
A reworked Real Lives Bill was refiled earlier this month and we are thrilled to report it has 115 co-sponsors. Last session, the Real Lives Bill came close to passage, but this sesion we expect to get it across the finish line. Sponsored by our good friend, Rep. Tom Sannicandro (see his video above), Real Lives will change the way developmental services are financed and delivered for the tens of thousands of people with disabilities in the Commonwealth. It would allow individuals to determine how to spend their allocated dollars on the services and supports they need.
National Background Check Bill Re-worked, Re-filed
The National Background Check Bill has been an MSDC priority for many years, but has never made it out of the House Ways & Means Committee. This session, it has a better chance than ever. When it was re-introduced recently, it garnered 64 co-sponsors. If your legislator signed on, please thank them with a quick call or email. See below for links.
The bill would close a gaping loophole so that employees who work with people with disabilities undergo a federal background check (currently only a state check is required). With its reintroduction, the bill will have new language and the support of a broad coalition launched by the MDSC that includes DPS, DDS, EOHHS, DPPC, MDDC, MASS, DLC and The Arc.
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Whether your passion is running, hockey or... running, the MDSC is continuing our partnerships with three New England institutions to get our members involved and allow you to support the critical programs and resources we provide.
117th Boston Marathon: Support 'Team Get Real' Gets Ready
 The MDSC now has a full slate of 10 runners for the 117th running of the historic Boston Marathon on Patriot's Day, Monday, April 15. One of those runners is Janis Frazer of Roanoke, Virginia (right), who explains: "My college roommate, Kate, and her husband have a beautiful daughter, Kaltrina, who has Down syndrome. I know the MDSC has helped them immensely and that Kaltrina is fully included as a result. I am running to help support Kaltrina and others with Down syndrome that the MDSC supports." Thank you Janis! To read more about Janis and the other runners, visit our "Meet Team Get Real" page. Go here to donate to the cause. The MDSC is a proud partner of the John Hancock Non-Profit Charity Program.
Bruins 50/50 Game: Help Us Out & Catch a Game
Volunteers are needed for the biggest game of the year for the Bruins (in the Down syndrome community anyway!) On March 16 at 1 p.m., when the Bruins face off against the Capitals, the proceeds from the Bruins' 50/50 Raffle will go to support the MDSC and our critical programs. We need 20 volunteers to work the game, selling tickets until the 2nd intermission, at which point they'll be free to watch the rest of the game from Level 9. In this case, we really need go-getters that are ready to sell, sell, sell. Volunteers must arrive by 11:30. Email hockey@mdsc.org if interested. Go here for more information on our Boston Bruins Partnership.
Falmouth Road Race
Not quite ready for the Boston Marathon? Try the 7-mile Falmouth Road Race. Now in its 41st year, the run is historic because of the caliber of runners it attracts and the unmatched beauty of the seaside course. Of course, it's equally open to middle- and back-of-the-pack runners as well. This year, the MDSC has 25 numbers available. Email racemdsc@mdsc.org if interested. (Below, many of the runners and their supporters gathered for a pre-race luncheon at the Flying Bridge Restaurant in Falmouth).
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'A Full Life Ahead Series' Continues with Housing Workshop
On February 27, the MDSC continues its new series of transition-related workshops for parents and guardians of young adults with disabilities. The initiative, being launched in collaboration with Mass. Families Organizing for Change, will provide critical information for families with children transitioning to adulthood.
Join us for the 2nd workshop in the series at the MDSC Burlington offices from 7 to 9 p.m. Feb. 27. Guest speaker Steve Merritt, Executive director of the Norwood Housing Authority, will give an overview of the Housing Choice Voucher Program. He will leave plenty of time for questions.
See our Facebook Events posting here for full information. RSVP on our Facebook events page or to snadworny@riversidecc.org. Space is limited.
The series is all part of the MDSC's efforts to develop more opportunities for families who have children transitioning to adulthood. The series will focus on transition, employment, housing and other topics that will help to give them interdependent, full lives in their community.
Blizzard-Postponed 'New Parent Social' On For TOMORROW
With a blizzard all around us, we had to cancel our New Parent Social last weekend. We're hoping to fare better this weekend. Tomorrow morning, join us as new parents to children with Down syndrome and other loved ones come together for another New Parent Social at the MDSC Burlington office. Launched last year, our New Parent Socials have quickly become an indispensable tradition/event.
Our "Socials" are open to all parents of children under three with Down syndrome. Come meet other new parents: connect, learn, and share in an informal relaxed setting! Siblings, grandparents and other family members are also welcome. Light refreshments are served. See our Facebook event posting for complete information. You can RSVP and ask questions there or to Sarah Cullen at scullen@mdsc.org or (781) 221-0024, ext. 206.
RSVP By TODAY For D.A.D.S. Biggest Meeting of Year
 On Wed, Feb. 20, Dr. Brian Skotko, chair of the MDSC's Medical & Scientific Advisory Council, will be the featured guest at a Dads Appreciating Down Syndrome (D.A.D.S.) meeting at the Beacon Grille in Woburn.
Dr. Skotko is a Board-certified medical geneticist and Co-Director of the Down Syndrome Program at Massachusetts General Hospital. He has dedicated his professional energies toward children with cognitive and development disabilities.
The meeting is the D.A.D.S.'s group's biggest of the year. Cost is $25 and includes dinner. It is open to all (spouses, parents, etc), though space is limited. RSVP to dadsmass@yahoo.com by TODAY.Â
See our Facebook Events posting for complete details.
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Lynnfield Sibling & School Friends Launch DS Awareness FB Page
Zach Rothwell of Lynnfield and his Destination Imagination group have launched a community project highlighting awareness for children to learn more about Down Syndrome. Zach, whose baby sister has Down syndrome, and his group have created an awesome Facebook Page, dubbed Respectful Awareness. Visit the page here.
Zach's mom puts it this way: "We are so proud of these kids and know their awareness efforts will help Charlotte and all individuals with Down Syndrome. Please share this page with everyone, especially your kids. Let's spread kindness and understanding" Thank you Andrew, Christina, Dominick, Jackie, Maggie and Zach for all that your doing for students in Lynnfield and beyond!
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