The Boston Red Sox have invited the MDSC to participate in its annual Disabilities Awareness Night at Fenway Park on Tuesday, July 31.
The MDSC and other organizations will be featured in an on-field pre-game ceremony before the Sox take on the 2nd place Tigers.
Stay tuned to our Facebook page for more information next week.
|
On Monday, July 23rd at 7:00pm, as part of its Allen Crocker Speaker Series, the Boston Children's Hospital Down Syndrome Program is featuring Dr. David Stein, PsyD, a Children's physician.
Dr. Stein will be presenting on "Education and Down Syndrome: Translating Neurodevelopmental and Neuroscientific Findings to Practice." Dr. Stein is a member of the MDSC's new Medical and Scientific Advisory Board, which reviews research studies and decides if they are appropriate to share with MDSC members.
This free talk will be held at the Folkman Auditorium at Children's Hospital. You can attend in person, by live stream from home or by recording later. Check out this webpage for complete details on the Crocker Speaker Series, including upcoming speakers and archives.
The Allen C. Crocker Speaker Series honors the legacy of Dr. Crocker and is designed for parents and families members seeking quality information from experts on a range of topics related to Down syndrome. All talks are free.
|
As part of his doctoral studies, a graduate student at the Massachusetts School of Professional Psychology is conducting interviews with fathers of children with Down syndrome over the summer.
The interviews will focus on fathers' reactions to the prenatal diagnosis and then their reflections and experiences in raising their son or daughter with Down syndrome and the effects on their lives and their families.
The researcher, Timothy Ridge notes that thus far, most of the research on the parental experience of children with Down syndrome has focused on mothers.
The interviews will be conducted at the school in Boston and will take approximately 30 to 60 minutes. For more information, including details on who can participate, visit our research webpage here.
Working directly with researchers and scientists, the MDSC Medical and Scientific Advisory Council selects a number of studies each year that will be made available for MDSC members to participate in if they so choose.
Each research proposal received is carefully reviewed for content, ethics, and feasibility before forwarding the information onto our members.
|
|
|
Our 2nd Annual Buddy Walk by the Sea is just 8 days away! We hope you and your family can join us on Saturday, July 28th at Falmouth Marine Park to promote the acceptance and inclusion of people with Down syndrome in the South Shore, Cape, and Island communities.
REGISTER TODAY!
At our silent auction and raffle, you could win any number of prizes, including: And you can learn a few things from our wonderful group of exhibitors who will provide information, resources, and treats for you (and, in at least one case, your dog). 
|
|
|
  
Today is the deadline to ask your representative and senator to sign a letter of support to House Speaker Robert DeLeo (left) and Senate President Therese Murray (middle) urging passage of the "Real Lives Bill." Use this Action Alert from our partner, The Arc of Massachusetts. You can see the list of legislators already signed on here, and a Real Lives Bill Fact Sheet here.
The Real Lives Bill, sponsored by Rep. Tom Sannicandro (right), will change the way developmental services are financed and delivered for the tens of thousands of people with disabilities in the Commonwealth who receive state services. Under Real Lives, which you can see here in its entirety, individuals will be able to determine how to spend their allocated dollars on the services and supports they need.
TAKE ACTION NOW!
|
 | |
Steve Hawley is running the Falmouth Road Race for his daughter Alice
and in support of the MDSC. "How could I not?" asks Hawley.
|
A slate of 22 runners will take to the streets of Cape Cod on Sunday Aug. 12 to run the Falmouth Road Race in support of people with Down syndrome. Support these troopers on their 7-mile journey along the Cape coast. This year is the 40th running of this historic race. Go here to donate to their cause.
 Kristie Averill of Dedham Mackenzie Brewer of Westford Tom DeFranzo of Somerville John Dunleavy of Winchester Frank Perullo and Kristen Franks of Charlestown Mike and Dani Goodman of Watertown David Granfors of Holliston Stephen Hawley of Florence Emily LaMarca of Clinton Taylor MacDonald of S. Easton Kristine and John Ostrowski of Nashua Michael Pettinella of Worcester Jacqueline Pomroy of Bridgewater  Danny Roads of Marblehead Regina Shakin of Southborough Mark Stepper of Cambridge Jennifer and Jim Vacca of Grafton Jaime Warren of Hyde Park A story in the Daily Hampshire Gazette tells about one runner's, Steve Hawley's, decision to run. "After about eight years of receiving advice, education, and support from the Massachusetts Down Syndrome Congress, Steve Hawley decided it was time to pay it back, one step at a time for seven miles," the article says. Read the complete article here, "Florence Man Runs for Group that Helped His Family". |
Our national partner, the NDSC, is holding its 40th Annual Convention in Washington, D.C. this weekend. Our own Executive Director Maureen Gallagher and Family Support Director Sarah Cullen are in attendance. Maureen will be making her way around Capitol Hill, including a meeting with John Kerry's staff to ask for their support of one of priority federal bills, the ABLE Act.
For those who couldn't make it to D.C., the NDSC is providing a "live stream" of many of the sessions by experts in the field. They're calling it a "Convention from Your Couch." To watch these sessions from your home or office computer, sign up to register and you'll see an option to live-stream for a cost of $35 or $70 depending on whether you're a member.
|
Here's a wonderful resource for parents of children with complex medical needs that we wanted to share.
Complex Child is a free monthly online magazine written by parents of children with special healthcare needs and disabilities.
It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand. Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials.
Go to their website to see their June edition all about travel.
|
|
|
|
|
|
 | |
A.I.M. Member Caroline Shea (center) and Energi representatives accept a $1,000 award
from JP Morgan for the MDSC. Energi donated an additional $1,000 to the MDSC.
|
Energi, an Industrial Reinsurance Company that provides specialized risk management and insurance programs, has generously donated its contest winnings and an additional amount to the Massachusetts Down Syndrome Congress. The Boston-based Energi was selected as the T-Shirt Contest Winner for the J.P. Morgan Chase Corporate Challenge. According to its press release, the MDSC is "an organization close to the heart of many Energi employees." In addition to J.P. Morgan's $1,000 donation, Energi has added another $1,000 to the MDSC.
The award was presented at the finish line of Boston's version of J.P. Morgan's Corporate Challenge, a world-wide series of 3.5-mile running events open to groups of full-time employees from organizations within the business and public sectors. The theme of the Corporate Challenge was "Teaming up for a Greener Tomorrow" and included a competition for the "greenest" t-shirt design.
 Energi employees collaborated to design t-shirts that reflected the company's involvement in energy sector insurance and commitment to the community. Accepting the award at Boston Common (while wearing the award-winning t-shirts) were A.I.M. member Caroline Shea, and Energi's Megan McCarthy, who designed the shirt, and Nora Hanna. See Energi's press release here. We are grateful to Energi and J.P. Morgan Chase for their generous contributions.
|
|
|
