Williamstown Father to Speak at Advocacy Day in Boston

from iBerkshires.com: 
BOSTON — Williamstown resident Stephen Narey will be a featured speaker at the first MDSC Down Syndrome Advocacy Day at the State House on Tuesday, May 27.

The event is hosted by the Massachusetts Down Syndrome Congress and aims to encourage lawmakers to support critical policies and funding to ensure that all people with Down syndrome have opportunities to lead meaningful fulfilling lives in the community. At the top of the list is the National Background Check Bill (H.1674), a piece of legislation that would finally close a gaping loophole that puts people with intellectual and developmental disabilities at risk of abuse. Under current law, those hired to work with people with developmental disabilities are required to have a state criminal background check, but not a national check.

Hundreds of members of the Down syndrome community will gather for a luncheon reception followed by individual meetings with their legislators. They will walk the halls to share their stories and lobby our legislators to pass key legislation.

Narey, an attorney, is chairman of the MDSC Board of Directors and father to Cole, who has Down syndrome.

Speaker of the House Robert DeLeo of Winthrop will be given the MDSC’s first “Legislative Champion of the Year Award.” Other invited guests include Senate President Therese Murray, Boston Mayor Marty Walsh (primary sponsor of National Background Check Bill when he was a state rep.), EOHHS Assistant Secretary Rosalie Edes, DDS Commissioner Elin Howe, State Rep. Tom Sannicandro, and others. FOX25 weekend news anchor Heather Hegedus will emcee the event. Registration is free at www.mdsc.kintera.org/advocacyday.

MDSC Breakfast Fundraiser!

from Northbridge Dialy Voice by Deborah Gauthier:
One doesn't have to go to Disney to have breakfast with Minnie Mouse; she’ll be in one of the gift  baskets raffled Saturday at a breakfast to benefit the Massachusetts Down Syndrome Congress and the Criterion Early Learning Center of Whitinsville.
The breakfast will be from 8-11 a.m. at the Knights of Columbus Hall, 77 Prescott St., Whitinsville. The cost is a donation to a cause close to the hearts of Russ and Kelly Trottier of Sutton.
Their son, Colin William, was born two years ago with Down syndrome, and since his birth the couple has learned just how crucial the two benefiting organizations are to families like theirs.
Last year, Trottier raised money for the Down Syndrome Congress by running in the Boston Marathon. Unable to do that this year, he and his wife decided to sponsor a breakfast that they hope to make an annual event.
In addition to the Minnie Mouse gift basket donated by the Shanahan family, items available in raffles include a Tom Brady autographed Red Game jersey from Reebok, a David Ortiz autographed baseball  from Reebok and a  Dion Branch 8x10 autographed photo from Pro Sports Chick.
Those not interested in sports may be more interested in a tea and local honey gift basket donated by Ken Warchol, a “Thirty-One’’ gift basket donated by Ashley Tevapaugh, a custom portrait session for up to four, including an 8 X 10 print valued at $195 donated by Erica Ewing, or a 12-month gym membership from Blackstone Valley Physical Therapy.
The organizations that will benefit from the breakfast play a vital role in Colin’s development, Trottier said. “There are a number of other families in the area who need our help and would greatly appreciate support,” he said.
The Down Syndrome Congress and the Early Learning Center support and enable children and adults to be a part of the everyday life of their communities, Trottier said.
“Any donation, however modest, will go a long way in helping our family and friends with developmental disabilities to be active members of the Blackstone Valley community,” Trottier said.
For more information, contact Trottier at russell.trottier@gmail.com or 617-780-1927.

What would Allen think now? by Brian Skotko, MD, MPP

from Brian Skotko, MD, MPP - Blog:
One year has passed since the life of Dr. Allen Crocker ended and his legacy permanently began. During these past twelve months, I have often found myself searching: What would Allen—our friend, mentor, and advocate—think now?
Since his death, our world has witnessed the introduction of noninvasive prenatal testing for Down syndrome. With a simple blood stick performed as early as 10 weeks into a pregnancy, a woman can now learn with near 99% accuracy whether her fetus has Down syndrome. Allen was not anti-technology, nor am I. But, we both had long discussions about the responsibilities our society would have when such a day came.
About four years ago, I remember flying with Allen to Washington, D.C., by invitation of the Joseph P. Kennedy, Jr. Foundation, to discuss the creation of materials that could be consistently given to expectant couples after receiving a prenatal diagnosis of Down syndrome. We all agreed: the information needed to be honest, balanced, and real in order to be believable and used.
Before Allen died, he was able to witness the impressive result of arduous teamwork—Understanding a Down Syndrome Diagnosis. After many years of heated discussion, some of our national Down syndrome organizations joined forces with major medical associations to write this up-to-date booklet, now freely available to expectant women in print and digital formats. The materials could not be interpreted as propaganda issued by parent advocacy groups. No, the booklet had been scrutinized by organizations representing obstetricians, geneticists, and genetic counselors.  And, now, the copyright for the book is owned by the Joseph P. Kennedy, Jr. Foundation and administered by the University of Kentucky's Human Development Institute, both independent entities of the Down syndrome movement.
Allen was pleased.  But, I wonder: what would he think of our actions since then?
Our national Down syndrome organizations have now distanced themselves from the same materials they helped create, even removing all mention from their web pages. For reasons unclear to me, the National Down Syndrome Congress and Global Down Syndrome Foundation have jointly created a new pamphlet filled with factual inaccuracies and unbalanced information, which has not been peer-reviewed by medical organizations. They have replaced clarity with confusion and collaboration with competition. (I serve on the Professional Advisory Council of the National Down Syndrome Congress but was not consulted on the creation of their new materials.)
The National Down Syndrome Society has chosen not to support any materials. Its clinical advisory board did formulate a set of criteria by which it said it would hold companies accountable—a report card of sorts that outlined the responsibilities that came with the new technology. However, the National Down Syndrome Society has since silently removed these criteria from its web page, having lost its own confidence on how to advocate in these controversial times. (I served on their Board for five years, but our disagreements over this issue led to my early departure.)
The result? Expectant couples, at large, are still not receiving accurate, up-to-date, and balanced information, even though it now exists. Prior to these tests, we already knew that approximately 75% of women who received a prenatal diagnosis chose to terminate, but only 2% of pregnant women even got such a prenatal diagnosis. Now, the floodgates are open, and pregnant women across the country are asking their providers to order the test. As of 2008, there were only 240,500 people with Down syndrome in the United States, steps away from being classified as a “rare disease.” I know Allen would have been concerned.
But, he would also point out the successes of local Down syndrome organizations. They have rolled up their sleeves and gone into action, as a national effort imploded.
He would especially applaud his much loved Massachusetts Down Syndrome Congress (MDSC), whose Board he passionately served for more than two decades. The MDSC delivers a copy of Understanding a Down Syndrome Diagnosis to every expectant couple who calls. They have created a comprehensive Parents’ First Call Program, where trained mothers and fathers are available 24/7 to text, speak, or meet, in any language, with understandably frightened parents who just “got the news.” The organization has made connections—built trust—with every maternity hospital in our Commonwealth, often organizing Grand Rounds and hospital lectures. And, the MDSC made history this past summer, passing a state law that will result in our state’s Department of Public Health distributing a copy of Understanding a Down Syndrome Diagnosis, along with information about the MDSC, to every healthcare provider who takes care of expectant couples in Massachusetts. Now, that’s leadership. I hope other groups will follow; the MDSC is there to help.
We are all setting the example for other communities.
While the new tests are just available for Down syndrome and some other trisomies, the genetic revolution is arriving at our doorsteps soon. Should fetuses be tested for breast cancer genes? If genes are discovered to be associated with one’s sexual orientation, should future couples be able to test for “gay fetuses”? Should we just go ahead and decode the whole genome of our nation’s fetuses? What we do now sets the example for what’s to come.

Allen told us all to “carry on.” But, we need to wake up and realize that we cannot just carry on in the same old way. Our times demand bold leadership. Down syndrome organizations need to collaborate on important issues. The history books will write glowing chapters about Allen. But, what are they going to say about us?

read more here

Marlborough family presents award to ‘Glee’ actress

from Wicked Local Marlborough:
Actress Lauren Potter of “Glee” was recently honored with the first-ever Samantha Marcia Stevens Family Award of Excellence in Raising Awareness.
The award was presented to the television star on stage at the Massachusetts Down Syndrome Congress (MDSC) 16th annual Buddy Walk & Family Picnic in Wakefield, where Potter was the special guest. Potter is best known for her supporting role on the hit show “Glee,” where she plays Becky Jackson, a teen with Down syndrome who overcomes adversity to become co-captain of the Cheerios Cheerleader squad.
Brian Stevens of Marlborough presented Potter with the award that bears his daughter’s name, in recognition of Potter’s efforts to enlighten the larger society about the abilities of people with disabilities, including Down syndrome. Samantha, who is 6 years old, has Down syndrome and other complex medical needs.
The Stevens family has been working to ensure that people like her have opportunities to lead inclusive, fulfilling lives. In his remarks to the 3,000-strong crowd at Wakefield Commons, Stevens indicated that he is committed to the cause. The Stevens family was on hand for the award presentation and participated in the walk, which raised close to $400,000 to support the programs of the Massachusetts Down Syndrome Congress. Donations can still be made at mdsc.org.
Since her “Glee” debut three years ago, Potter, who herself has Down syndrome, has become the ultimate “self-advocate,” acting as a powerful spokeswoman for policies that bring equality and justice to people with Down syndrome, according to MDSC.
In November 2011, President Barack Obama appointed Potter to the Presidential Committee for People With Intellectual Disabilities, which advises the White House on how to improve access to schools and jobs for people with disabilities.

Read more: Marlborough family presents award to ‘Glee’ actress - Marlborough, MA - Marlborough Enterprise http://www.wickedlocal.com/marlborough/news/lifestyle/celebrations/x1272745785/Marlborough-family-presents-award-to-Glee-actress#ixzz2B55aK9Fo