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Prenatal Law Followup
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Golf-A-Thon Hits Hole-in-One
Seaside Buddy Walk Approaching
'Parents First Call' Training
June 30, 2012 | No. 8
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Two Inspiring News Columns

We wanted to share with you two remarkable columns that were published recently. The first, titled, "Who Wouldn't Want a Child Like This?" was penned by Globe columnist and MDSC Board member Beverly Beckham. "She was born nine years ago on June 20, and it was the best of times and the worst of times," Beckham writes about her granddaughter Lucy (pictured above). 

The second column, "The Run of His Life," by Valle Dwight of Northampton, beautifully tells the story of her son Aidan's decision to run for his freshman class Student Council Vice President. "Forty years ago he wouldn't have even been at the high school," Valle writes. "Thirty years ago maybe he would have been in a classroom in the basement (if he was lucky." 

 

Run Falmouth for Team MDSC


There are still 3 spots on Team MDSC for the 40th running of the New Balance Falmouth Road Race on August 12, 2012. The course is 7 miles along the beautiful Cape coast. 

 

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 or to apply for one of the remaining spots, email MDSC Development &  Communications Director Angela Ortiz at [email protected]. Deadline is July 7, so apply now. 

 

 


 


 

Connect with MGH Clinic 

 

Last week, we announced the launching of Mass. General Hospital's new comprehensive Down Syndrome Program. 

 

Unfortunately, we shared a faulty link. Below is the correct link, along with other key links for the MGH clinic.



Dear MDSC Member, 

 

It is hard to fathom all the great news that happened in the past week for the MDSC and the Down syndrome community in Massachusetts. 

Just a week ago, at the State House, Governor Patrick made history, signing a landmark prenatal Down syndrome testing bill that will finally ensure that new and expectant parents in Massachusetts who get a Down syndrome diagnosis will get accurate up-to-date information about what it really means to have a child with Down syndrome. 


Below, you will read about the ensuing news coverage, including a TIME Magazine piece that followed up on their excellent report in February. Above, you can see a photo of the news being broadcast over New York's Times Square. 

 

To cap the week off, the TV news magazine program "Chronicle" put together an awesome episode exploring issues in the Down syndrome community, with a particular focus on the strides that have been made for people with Down syndrome in recent decades. 

 

One parent, Emily Nissenbaum, may have said it best: "It was one of the best [shows] on Down syndrome I have ever seen. The values discussed, the family stories, John [Anton]'s story were so filled with dignity, love and real life! I was thrown back to 40 years ago when I learned our daughter's diagnosis but feel so heartened by all the work of younger families today. Congratulations to the MDSC on behalf of all of us blessed to have children with Down syndrome!" 
'Chronicle' Takes Comprehensive Look at Life with Down Syndrome

 

A month ago, when we got the call from Channel 5's 'Chronicle' that they wanted to do a show about how the lives of people with Down syndrome had changed for the better in recent decades, we were, for obvious reasons, thrilled. And when producer Amy Masters and a videographer came to our Burlington office shortly thereafter to film a Self-Advocate Advisory Council meeting, and interview our executive director and self-advocate Melissa Reilly, we thought they were on the right track. When they shadowed MDSC Advocacy Specialist John Anton at his job at the State House, and met with our own Dr. Brian Skotko, Melanie and Gracie Perkins McLaughlin, and Lauren and Lucy Falcone, we knew they would have everything they needed for a comprehensive piece. 

 

Still, as is the case with news stories, you never know exactly how it's going to turn out its broadcast. But as you will see for yourself, Channel 5's coverage was pitch perfect. They reported the sensitive topic of advancements in prenatal testing with dignity and professionalism. The timing couldn't have been better, too, coming right on the heels of a huge legislative success - the signing of the prenatal bill - that had been two years in the making. Thanks to everyone who stepped up and participated. See the episode below in four parts.

 

 

Historic Prenatal Law Makes Waves
Governor Patrick greets visitors just before signing the landmark legislation into law.
We hope you didn't miss all the excitement last week around the Governor's signing of the landmark prenatal down syndrome legislation that will, without a doubt, have a tremendous impact for decades to come. If you did miss it, let's get you caught up. 
TIME Magazine Reporter Bonnie Rochman wrote an excellent story on her blog, following up on her 4-page spread in the February issue of TIME. In her blog post, she corrects the record: Massachusetts is actually the third state to institute such a law, which was modeled on the national Kennedy-Brownback bill. 

 

Madeleine Will, Vice President for Public Policy at the National Down Syndrome Society, commented on the occasion: "The MDSC, by promoting the passage of this landmark legislation has permanently changed the landscape for prenatal testing. This model state legislation sends the powerful message that society has a huge stake in ensuring that women receive accurate, up-to-date, non-directive information about Down syndrome and other disabilities from their healthcare providers as we move forward into a 21st century where non-invasive prenatal testing will be commonplace."

Finally, we once again want to thank everyone involved at the State House: Governor Patrick, bill sponsors Rep. Tom Sannicandro and Senator Katherine Clark, Secretary of Health & Human Services Commissioner Judy Ann Bigby, Department of Developmental Services Commissioner Elin Howe, Department of Public Health Commissioner John Auerbach, Lieutenant Governor Murray, Senate President Therese Murray and Speaker of the House Robert DeLeo. 

 

Among our other champions, there are many to thank as well, including Dr. Brian Skotko, Jane Lane, Jim Shay, Kristin Britton, Dave Falcone, Katherine Craven, Melanie Perkins McLaughlin, Chris Donnelly, Sarah Cullen and Laura Noble. This historic moment would not have come to pass without you. 

In the Governor's lobby, Katherine Craven chats with Secretary of
Health & Human Services Judy Ann Bigby before the historic bill signing.
In the background is Katherine's son, Joe Kryzanski.
Latest State Budget Funds MDSC and Other Disability Services

 

 

In yet another instance of positive news emanating from the State House for the MDSC and people with Down syndrome, the Conference Committee released its Fiscal Year 2013 budget on Wednesday. 

 

Included in the document, which you can see in its entirety here, was $100,000 of critical funding for the MDSC and its programs. If this line-item survives Governor Patrick's veto pen in the next week, it will be the first time in the MDSC's 29-year history that it receives funding in the state budget. 

 

We are grateful to the Senate and House Conference Committee members, in particular Senate Chairman Stephen Brewer (left) and Vice Chair Jennifer Flanagan, who took the time to meet with MDSC representatives last week in the midst of deliberations. We also want to thank Senate President Therese Murray (right), Speaker of the House Robert DeLeo (2nd from right), House Ways & Means Chair Brian Dempsey (2nd from left), Sen. Katherine Clark and State Rep. Tom Sannicandro, all of whom steadfastly backed our cause. 

The Conference Committee also did right by the broader disability community. As our partner The Arc of Massachusetts reported, their budget is very positive for people with intellectual and developmental disabilities: Family Support was funded at $49.5 million, Salary Reserve at $20 million; a large cut to MassHealth Day services was rectified; employment, transportation and housing assistance for 1,430 graduating high school students was added.

 

If your Senator or Rep. is on the Conference Committee (Brian Dempsey, Stephen Brewer, Stephen Kulik, Jennifer Flanagan, Viriato DeMacedo or Michael Knapik), please contact them to say "thank you." And if you contacted your Senator or Rep. during this process and asked for their support, be sure to reconnect and thank them as well.

Golfers at Turner Hill Club stroke a "Hole in One" for the MDSC

Bruins greats Ray Bourque (middle) and Reggie Lemelin (left) were among those who helped raise more than $120,000 for people with Down syndrome
MDSC Board Vice Chair Paul Karrlsson-Willis spearheaded the 6th Annual Charity Golf-a-Thon on Monday at the Turner Hill Country Club in Ipswich. A reception, hosted by Karrlsson-Willis was held Sunday night at the CoCo Keys Resort in Danvers, where golfers mingled with self-advocates, including Melissa Reilly, Ashley Wolfe, Chris Stark, Kate Bartlett, Louis Sciuto and Guest Speaker John Anton. 
Tournament host 
Paul Karrlsson-Willis

Sixty-two golfers hit the links on Monday, battling through on-and-off downpours. The ringers of the day were Boston Bruins greats Ray Bourque and Reggie Lemelin, whose team took home impressive trophies. One golfer, Tom Milne, got a hole-in-one on Hole #10, which won him a premium electronics package. 

All told, the event, sponsored by International Assets and ITG Canada, raised over $120,000 for critical MDSC programs that will ensure that individuals with Down syndrome are valued, included and have opportunities to live meaningful lives. Donors raised $3,500 for our new Allen Crocker Self-Advocate Internship Program. 

Thanks so much to Paul, our generous sponsors, our golfers, Development Director Angela Ortiz, volunteer Suzanne Siino and  all those who made this such a successful and fun day. See our YouTube video below and all the photos here



2nd Annual Buddy Walk By the Sea Less Than A Month Away

 

Join the MDSC on Saturday, July 28th in picturesque Falmouth for our 2nd Annual Buddy Walk by the Sea, sponsored by iParty and New Balance. At the Falmouth Marine Park that morning, we'll be promoting the acceptance and inclusion of people with Down syndrome for people who live or vacation on the South Shore, the Cape, and the Islands. 

 

This seaside morning celebration includes children's activities, a one-mile walk, chances to win raffle and silent auction items, resources and information from exhibiting disability organizations, a tasty post-walk treat from Smitty's Homemade Ice Cream, music by The Elbows (below) and fun for the whole family! 

 

 

You'll get to meet our four Self-Advocate Ambassadors - Billy Corcoran, Connor Gifford, Carey Daly and Tracey Newhart - who are helping plan and publicize the event. We are counting on you to be a part of this fun and meaningful day to make a difference in the lives of people with Down syndrome. See here for details and registration.

 

14 Moms & Dads Trained on Parent's First Call Program

 

Last week, 14 moms and dads, including 3 from the Cape and one from NH, attended a 5-hour MDSC Parent's First Call training in Burlington, MA. The group shared highlights of their own journeys, including who delivered the diagnosis, what has been helpful to them as a family, etc. Sarah Cullen, our Family Support Director, guided them through training for active listening, the process of grief, connecting to resources, etc. 
 
One of the participants, Tricia Jonas, shared the emotional reaction she had when her son Lucas (pictured right with his mom) was first diagnosed and how her feelings evolved:
 

The diagnosis was given to me right on the operating table and I remember instantly falling apart. I knew nothing about Down syndrome or what it meant for my son and our new little family. All I remember was desperately trying to reach out to anyone we knew who could help put this news into perspective. 'We just HAD to know someone with Down syndrome, right?' Well, we didn't, and we never felt more alone. Scared.  The well-meaning 'I'm sorry's' offered to me by everyone who learned of our news sent me reeling, daily.

 

Almost 3 � years later, my son is the most magical child I could have ever imagined.  I realize that it is an irrational emotion, but I sometimes feel ashamed for ever having felt regret or sorrow over this beautiful boy that has given me so much more than I could ever give him.

 

Everyone will come to terms with what this diagnosis means for their family in their own time, but I will be happy to make the initial days and months a little easier and less scary for new parents."

 

Thank you, Tricia, for having the courage and strength to share your story! 

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