REAL LIVES CONFERENCE EDITION |
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Take Action: Sign Our 'Real Lives' Petition Now
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2nd Annual Rock'N'Dock Festival May 30 - June 2
At the end of May/beginning of June, Patriot Place in Foxboro will be jumping with dogs - literally. That's when the 2nd Annual "Jumping Up for Down Syndrome" Festival, organized by Dave Skoletsky of Go Team 21, comes to town.
Three world-record holding dogs will perform, including Dave's own Yeager, the canine world-record holder for vertical leap, all to raise funds and awareness for Down syndrome (Dave's daughter Eve has Down syndrome). You may remember them from an unbelievable performance last October during our Buddy Walk.
The first night features a Down syndrome benefit concert featuring Nashville recording artist,five-time Boston Music Awards Best Folk Artist, singer/songwriter Lori McKenna. See here for more information.
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Cheer on 'Team Get Real' on Patriots Day, April 15
Believe it or not, Patriots Day/Marathon Monday is just over two weeks away!
For the MDSC and the individuals and families we support, it's the day 14 dedicated runners start their journey in Hopkinton and cross the finish line 26.2 miles later in Boston. Each step along the way, they will
These runners have spent the last several months training hard to collectively raise over $43,000 and generate significant awareness. They need our support and encouragement on Race Day! Returning runners always say that our strategically-placed cheering section is what pushes them to reach that finish line.
Join the MDSC Cheering Section at the 11 a.m. in the grassy area on Commonwealth Avenue opposite Chesterfield Street in Newton. Click on map below for specific location and directions.
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.
If you and your families are planning to attend to cheer on our runners, please email volunteers@mdsc.org
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23-year-old Jillian Berube of Westminster, MA is now a published songwriter. On March 21, World Down Syndrome Awareness Day, her song, "My Life", was included in an an anthology of visual and written artwork by 100 people with Down syndrome in the U.S. and Canada.
Published by Woodbine House, the works in "A Room of Golden Shells" were created by artists 14 to 50+ and were selected by Woodbine House staff. As the publisher says, it is "one of the rare occasions that the creative talents of teenagers and adults with Down syndrome have been showcased outside their own community. Inspired by nature, popular culture, travel, master artists, faith, and dreams, these pieces dazzle us with mastery of craft, captivate us with a novel metaphor...and tell us how it feels to live with a disability." You can purchase the book here.
Berube's lyrics read like a poem, but Berube said that the words come to her as music, not poetry. Her piece deals with the difference between what life is actually like as a young woman with Down versus what people expect it to be. "It comes from my heart," she said, according to a story in the Fitchburg Sentinel & Enterprise.
It is fitting, then, that Berube, a member of the MDSC's Self-Advocate Advisory Council, participated in our Real Lives Conference last weekend. After all, her life is a vivid example of someone with Down syndrome living a very fruitful, rewarding, Real Life.
But perhaps Jillian, the published author, says it best in her song ... "I am the kind of person that I was meant to be."
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Save the Date: June 7 for Annual CJs Spring Swing
Every year since 2004, Sandra, Sean and CJ Buckley (pictured) have hosted a golf tournament and auction that raises much-needed funds to support programs and individuals dedicated to improving the lives of children and adults with Down syndrome.
The MDSC is proud to be one of those organizations. This year, join the Buckleys and support these organizations on June 7 for the 9th Annual CJ's Spring Swing. It will be held at the New England Country Club in Bellingham, Mass.
For more information, contact the Buckleys at
snsbuck@verizon.net.
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Family Hosts Charity Run, then Runs Marathon
On April 15, for the fourth consecutive year, Emily and Mark LaMarca of Clinton will run the Boston Marathon in support of their 6-year-old son and people with Down syndrome throughout the Commonwealth.
And if that's not enough, the week before, on Sunday, April 7, they are hosting another running event, the Run4Cole, named after their son. The 5K run or 1-mile walk in Clintion will raise money for the couple's Boston Marathon effort. They are running on the MDSC's Team Get Real.
The LaMarcas are doing yeoman's work not only training for the marathon, but also organizing the Run4Cole. "We all have an ambitious fundraising goal, but are committed and inspired to take this journey for our loved ones with Down syndrome," they wrote on their website.
Visit their website here to learn more and register. See an article about them in the Clinton Item.
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Kentucky Prenatal Law Modeled on Mass. Passes
 
Following in Massachusetts footsteps, Kentucky lawmakers passed a bill that will expand access to information about Down syndrome to all new and expectant couples.
The bill, "The Down Syndrome Information Act," was signed into law by Governor Steve Beshear. As was the case last June with Governor Patrick, supporters in the Down syndrome community surrounded the Governor during the momentous signing ceremony.
Like the landmark Massachusetts law, the legislation means that when health care professionals or facilities deliver a Down syndrome diagnosis, prenatally or postnatally, they will also provide families with accurate, up-to-date written information and referral to support organizations.
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Liam Nation Fundraiser Goes Into the Mystic
On Saturday, April 20, Liam Nation, a proud supporter of the MDSC, hosts Suzane Northrup, an internationally acclaimed Medium, Grief & Bereavement Expert, TV and Radio host and Author of 3 books.
According to her website, the Northrup "has helped thousands worldwide to recover and heal from the loss of loved ones by bridging the gap between the world of the living and the spiritual world where the departed reside." Perhaps you too can connect with a loved one who has passed over at this mystical event!
Event is at 6:00pm at the Tewksbury-Wilmington Elks Lodge. Tickets are $50. Call Erin Knyff at 1-978-851-8015 to purchase tickets in advance - SPACE IS LIMITED! See flyer here. See the Facebook events page here.
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Real Lives Conference Lives Up to Billing
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Most MDSC Advocates Ever Descend on Capital for Buddy Walk on Washington
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17th Buddy Walk & Family Festival Launches, Dubbed 'Walk for Real Lives'
Building on the theme of this year's Annual Conference, the MDSC has officially launched our 17th Annual Buddy Walk & Family Festival, dubbed the "Walk for Real Lives." Teams can sign up and individuals can donate here.
The name, the "Walk for Real Lives," like our Real Lives Conference, stems from the "Real Lives Bill," the critical piece of state legislation that promises to give people with Down syndrome and other disabilities more control over the their funds and their lives.
This year, we are pleased to report that some things remain the same, and some things are different. In the first category, we are thrilled to welcome back our lead sponsor, Verizon.
In the latter category, you might notice a slightly different name. We felt that our previous name, Buddy Walk & Family Picnic, didn't quite describe the "festival" atmosphere and the variety of entertainment offerings - live performances, face-painting, music-making, climbing trucks, etc. - that our Buddy Walk now boasts. That is why it is now more accurately called the Buddy Walk & Family Festival.
Second, in response to demands for more variety in the food offerings, we are launching a new lunch program. Rather than include lunch in the cost of registration, we are giving you more control over your lunch options. You can reserve a bagged lunch when you register for an additional cost, or you can buy food from private vendors who will be on site throughout the event.
The MDSC Buddy Walk Program is New England's largest public awareness platform to promote acceptance and inclusion of people with Down syndrome. The Buddy Walk & Family Festival, our signature walk, takes place during National Down Syndrome Awareness Month and draws in 4,000 people to celebrate our community and support the important work of the MDSC.
We ask that all walkers, ages 13 and up, strive to reach the $150 fundraising minimum by October 31st. Your fundraising efforts are critical to our mission and directly impact programs and services that provide hope to new and expectant parents, training to medical professionals and students, best practices to educators, opportunities for teens and adults, and a strong voice on Capitol Hill.
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Complete Northeast Down Syndrome Ed Conference Archives Available Online
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Prospective Gopen & Crocker Fellows Can Apply With DD Council Thru April 9
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Perkins McLaughlin Teams with NDSS to Produce Moving Video Series
Melanie Perkins McLaughlin has done it again! Many of us know Melanie as an MDSC First Call Parent extraordinaire, and Gracie's mom, who advocates tirelessly for her daughter and the Down syndrome community. She also happens to be a professional filmmaker. Her latest project combines all of these passions.
Last year, Melanie was commissioned to produce and direct a video series for NDSS's "My Great Story" campaign. On World Down Syndrome Awareness Day, the sweet, touching, sometimes painful videos were launched. There are 10 videos in all, each focusing on an individual or family who submitted their remarkable stories to NDSS. The videos run about 4 minutes each.
Four of the featured families are local friends of the MDSC: "Different Sneakers" with Jessica and Jaylin Melville, "My Isaiah" with Angela and Isaiah Lombardo, "One Sibling's Act Leads to Change" with Trent and Megan Briggs, and "Green Light to Driving" with Jay Nothnagle. You can see all the videos here. Congratulations to Melanie and thank you to all the families for sharing their stories!
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