MDSC Masthead
This Week
10 Spots Left for Falmouth Road Race
New Parent Social Tomorrow
MDSC Seeks Summer Parents First Call Intern
Annual CJs Spring Swing
Tee Off for D.A.D.S June 24
Thyroid Dysfunction Study
Call Your Senator to Support the MDSC
3 Buddy Walks in 2013
Membership Survey Needs Your Input
Videos by World-Renowned Education Experts
The MDSC Shares Expertise with Genetics Group
Rock'N'Dock Festival
AIM is Not Ready for Summer Yet
Calling for Education Photos
USA Today Tackles Prenatal Ds Testing
May 17 , 2013 | No. 20
New & Expectant Parents
Join The MDSC
Volunteer
Advocate
Donate Today

Calendar Button
Like us on Facebook Follow us on Twitter View our videos on YouTube

10 Spots Left for Race in Falmouth: Apply Now!

MDSC Team numbers are going fast for the Falmouth Road Race with only 10 numbers remaining. Don't miss out on this opportunity to run for the Massachusetts Down Syndrome Congress along a pristine 7-mile stretch of Cape Cod coastline on August 11.

 

If you interested in having fun, running and fundraising, join the cause and make a difference in the lives of people with Down Syndrome.

 

Go here for an application. For more information email MDSC Executive Assistant Jacquie Sherman at [email protected].

New Parent Social   Tomorrow at MDSC Office

 

Bring your whole family to an informal New Parent Social this Saturday from 10am - Noon at the MDSC Office. 

 

Grandparents, siblings, a friend... all are welcome. A light breakfast will be provided. It promises to be a great opportunity to share resources and meet new friends!

 

RSVP requested to Family Support Director Sarah Cullen. Hope to see you there!

 

Click here for a flyer with more information  

and upcoming dates.

A short clip of a recent New Parent Socia
A short clip of a recent New Parent Social

 

MDSC Seeking Summer
Parents First Call Intern

The MDSC is looking for a Parents First Call Intern to join our team for the summer, and learn skills that will serve him/her well going forward. 

 

The 13-hour/week position will help the MDSC achieve our mission by helping with a variety of tasks, including designing and updating First Call program materials, developing a Grandparents Welcome Package, conducting outreach with health care providers and building partnerships with them, expanding our Diversity Outreach program and other projects. 

 

See here for complete description.

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 

[email protected]

Tee Off for D.A.D.S. on June 24 in Easton 

  

The Dads Appreciating Down Syndrome (D.A.D.S) 4th annual golf outing on Monday, June 24, at Easton Country Club, in Easton, Ma. This event is the organization's biggest fundraiser of the year. See here to apply and for additional information and sponsorship opportunities..  

 

Also, don't forget D.A.D.S.'s annual Family Outing at Kimball Farm in Westford on Sunday June 16.

D.A.D.S, a proud affiliate of the MDSC, will have its own tent for the more than 300 anticipated attendees. 

 

Contact Jeff Roback at 339-788-1460 or [email protected]. 

Thyroid Dysfunction Study for Infants with Ds 

 

The Division of Pediatric Endocrinology at the UMASS Memorial Children's Medical Center is conducting a research study to determine whether infants with Down syndrome need to be screened at more frequent intervals during the first year of life for thyroid disorders.

 

Thyroid hormone is critical for brain development in the first three years of life.  Early diagnosis and treatment of thyroid disorders in all infants can optimize neurodevelopmental outcomes. This study involves screening for thyroid disorders with a heel stick blood sample at 2 and 4 weeks of age and monthly thereafter for the first 12 months of life. If your infant is diagnosed with a thyroid disorder then treatment will be started promptly.

 

Criteria: Full-term newborn with Down syndrome less than 2 weeks old.

 

If you are interested in learning more about this study, please call Karen Cullen, BSN CDE or Penny Feldman, M.D. at 774-443-8874. 

 

Complex Needs Group Gets Relaxed & 'Mindful'
Derik Newton and Dr. Emily Davidson

 

The MDSC/Boston Children's Hospital Complex Needs Group met for the third time last weekend, and it was a calming affair.

 

The meeting started with a discussion about what people do to relax and take care of themselves as well as the barriers that make getting relaxed difficult.  Then, Dr. Emily Davidson, director of the Children's Hospital Down Syndrome Program and a Registered Yoga Teacher, led the group in a mindfulness activity - chair yoga and meditation.

 

Throughout the morning there were opportunities to unwind with a massage from special guest Derik Newton, a graduate of the Cortiva Institute, and a professional member of the American Massage Therapy Association with expertise in Myofascial therapy and Reiki.  Derik sees clients at South Boston Yoga and the Canton Pilates Studio. Learn more at www.deriklmt.com

 

Afterwards, one mom wrote that she "enjoyed every minute and appreciated the opportunity to connect with other people like myself."  

 

The MDSC/Boston Children's Hospital Complex Needs Group meets quarterly alternating between the hospital location and the MDSC offices.

Group 'Tree Pose"

Call Your Senator to Support the MDSC

 

Last year, we were thrilled when both the state Senate and House of Representatives agreed to include a $100,000 appropriation in the budget for the MDSC.  Although that $100,000 line item once again made it into the House

 version of the FY14 budget (which begins July 1, 2013), unfortunately, the Senate failed to include our appropriation in its version. 

 

Our friend, state Senator Katherine Clark (right) has agreed to sponsor a budget amendment to include that funding for the MDSC. She will file the amendment today. 

 

Now, we need MDSC advocates to call your State Senator and ask him or her to support Senator Katherine Clark's budget amendment for line item 5911-1003 to would keep the MDSC's $100,000 appropriation in the FY14 state budget. This money is critical to the continuation of the MDSC educational outreach programs that help the 5,000 families who are a part of the MDSC network. 

 

3 Buddy Walks in 2013: Wakefield, Cape, & Central MA. Join Us at One or All Three
  

For the first time in 2013, the MDSC is hosting three Buddy Walks across the state to bring families together, create awareness and with an unprecedented scope. We are incredibly excited about the expansion of our Buddy Walk Program this year to include a Central Mass event. Each of our Buddy Walks has a unique feel that captures the character of its surroundings. 

 

3rd Buddy Walk by the Sea - July 27


Once again, our Buddy Walk by the Sea rolls into Falmouth Marine Park over the summer, raising awareness across the Cape, Islands and South Shore and raising funds for critical MDSC programs. Last year we welcomed more than 250 people. This year promises to be bigger and better, as we go "overboard" with our Pirate theme. The Toe Jam Puppet Band will kick off the festivities. Sing along to 'Pirates Arrr Funky', dance pirate jigs, and meet mermaids! And our Self-Advocate Ambassadors will return to the stage.
 

 

1st Buddy Walk & Harvest Fair - Sept. 22

 

Our first ever Buddy Walk & Harvest Fair in Central Massachusetts will be held September 22 at the beautiful River Bend Farm in Uxbridge. We expect to bring more than 500 individuals with Down syndrome, families, and friends together for an early autumn celebration. We will have children's entertainment, games and refreshments, culminating with an early autumn 1-mile stroll around the grounds. Funds raised will support all MDSC programs advocating for full, meaningful lives for individuals with Down syndrome across the state.

REGISTER NOW! 

 

17th Buddy Walk & Family Festival - Oct. 13

For 16 years, it was known as the Buddy Walk & Family Picnic. It has always been our biggest annual awareness event and fundraiser. In fact, given  the "festival" atmosphere and the variety of entertainment offerings - live performances, face-painting, music-making, climbing trucks, etc.- that it now boasts, we have decided to more accurately call it our the Buddy Walk & Family Festival.

 

This year, we are launching a new lunch program to give you more control and variety in the food offerings. We are also thrilled to welcome back to our Buddy Walk stage in 2013 Rachel Coleman of "Signing Time!", the television program that teaches children basic American Sign Language in a fun, engaging way.

 

About the Buddy Walk Program

The Buddy Walk� was developed by the National Down Syndrome Society in 1995 to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. The Buddy Walk has grown from 17 walks in 1995 to nearly 300 walks planned for 2013 worldwide. In 2012, more than $11.5 million was raised nationwide to benefit local programs and services, as well as the national advocacy and public awareness initiatives of NDSS that benefit all individuals with Down syndrome. The MDSC Buddy Walk Program is New England's largest public awareness platform to promote acceptance and inclusion of people with Down syndrome. 

Membership Survey Needs Your Input

 

The MDSC is launching a comprehensive membership survey to give us the necessary information to guide our planning, activities and fundraising for the future. Over the next month, surveys are being distributed to hundreds of parents/guardians and family members of individuals with Down syndrome, as well as individuals with Down syndrome who are 18 or over.

 

TAKE SURVEY NOW!

(and receive a free one-year MDSC membership!)

 

Even with our successes and growth over the past 3 decades, we understand that Massachusetts still has a long way to go. As we look towards the next 5 to 10 years, we want to be as informed as possible about what is affecting you and how we can be most helpful to you.

 

We realize that it might take as long as 15 minutes to complete the survey. But your response critical to helping us think about and determine the future. We appreciate your time, value your perspective, and need to understand your experiences to maximize and direct our resources. You can take the survey here (you will also receive a free one-year MDSC membership!)
EXCLUSIVE: Videos by World-Renowned Education Experts Can Change Lives 

  

See Brendan Durkin of Newton deliver the Self-Advocate Keynote at the Northeast Down Syndrome Education Conference. 
  
Whether you're a parent or educator, this is an opportunity you don't want to miss... Last winter, we hosted Down Syndrome Education International, the undisputed world-renowned experts on Down syndrome education for the first-ever Northeast Down Syndrome Education Conference. 

Now, for a limited time, whether you attended the conference or not, you can view all 6 keynotes and 18 hour-long workshops covering an amazing array of topics all based on DSEI's empirically-tested best practices for educating students with Down syndrome, such as:
  • Social Development
  • Literacy Skills
  • Speech
  • Age-Appropriate Behaviors
  • Math Skills
  • and so much more!  

These two dozen recordings are available for $39.99 for those who attended the conference and $69.99 for non-attendees.

   

PURCHASE EDUCATION VIDEO SERIES HERE

 

The six keynotes cover major topics for all students with Down syndrome and their families. The breakout sessions are targeted for specific age ranges: Early Years (0-5), Childhood Years (5-11), or Adolescent Years (11-High School Graduation).


These recordings will be invaluable to you, especially as you plan your child's/students' IEPs and doing what it takes now to get ready for next year. This offer will expire at the end of June, so you have less than 2 months to take advantage. Once purchased, the professional-quality videos are available for online viewing through the end of the year.     

 

MDSC Staff & Mom Share Expertise with New England Regional Genetics Group

On May 3, MDSC Executive Director Maureen Gallagher and Family Support Director Sarah Cullen presented to the New England Regional Genetics Group about Prenatal First Call and the state's Prenatal Bill passed last June.

First Call Parent Mentor Melanie Perkins McLaughlin shared with NERGG members her personal story, from receiving the diagnosis, to her decision-making process, and how she chose to become a First Call mentor. You can see the presentation in its entirety here. 

The MDSC is involved in several initiatives aimed at educating health care professionals, with the understanding that they are the key to ensuring that people with Down syndrome and other disabilities have access to high quality medical services. This includes the offering of Grand Rounds for medical students, ongoing partnerships with maternity hospital, 
our collaboration with The Arc of Massachusetts on Operation House Call, and our work with the MA Department of Public Health to implement the new Prenatal Bill
 
Our outreach to NERGG is another example of the MDSC's attempt to build strong relationships and educate those in the healthcare field. 
2nd Annual Rock'N'Dock Festival Features Record-Breaking Canines 

 

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 (below), 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.  

 

A.I.M.: Not Ready for Summer Yet!

 

The Advocates in Motion program (A.I.M) invites you to join us at one or all of these fun events before we break for the summer! Please direct RSVPs and questions to [email protected]

 

This Sunday, May 19

AIM @ West Suburban YMCA

276 Church St, Newton Corner

12:30-3:30pm

As summer approaches, are you thinking about job and volunteer opportunities? We will go over some basic steps of the job process- from brainstorming about jobs of interest to you, to putting a resume together, to the interview. We will also have a visit from a music therapist, so get ready to rock as we try out different instruments!

 

Sunday, June 2

Paint with AIM at the Urban Art Bar

163 Old Colony Ave, Boston

3-6pm

RSVP by May 24 to [email protected]

Join us for an afternoon of painting and socializing at the Urban Art Bar (www.theurbanartbar.com). Artists will lead us through the process of creating our own work of art step-by-step. Paint brushes, canvas, paint, an apron- all the supplies you need to create a masterpiece are included! No experience required- just be ready to have fun! FREE for registered AIM participants. Parents/friends are welcome to participate at the cost of $20.

 

Thursday, June 13

Trip to Google Cambridge

3 Cambridge Center, Cambridge

4-6pm

Space is limited. Email [email protected] if you are interested.

Spend 1-on-1 time with a Google employee to learn about all of the things you can do using Google.com, get a brief overview of online safety tips, and tour the awesome Google offices!

 

Sunday, June 23

AIM End of Year Party!

Town Line Ten Pin, Malden

1-3pm

RSVP by June 14 to [email protected]

We hope you can join us for a celebration before we break for the summer! We will have lunch, bowling, and an awards ceremony. Parents, siblings, and friends are welcome- the more, the merrier!

Calling for Your Education/Inclusion Photos for our Educator's Manual

 

 

The MDSC Education Task Force is looking for pictures of elementary school children (grades K-6) with Down syndrome to include in our first Educators' Manual. The Task Force has been working on the comprehensive Educator's Manual for more than two years, and now it is almost ready to go to print..... except we need more photos!

 

The Manual includes best practices to guide educators in making the accommodations and adaptations necessary to best teach students with Down syndrome.

 

Your pictures of your loved ones learning will bring the manual to life. Please complete this photo release form for each individual pictured (including your own child, other children, classmates or educators).

 

Here are some ideas of what your child might be doing: reading, writing, working with math problems, at the computer, using an augmentative device, signing, working in a small group, listening to a story, talking to friends, at their kindergarten graduation, doing a presentation, getting on the bus, eating lunch with friends, attending a school assembly, participating in an after-school/extra-curricular event, working on an art project, in music class, on the school playground, in gym class.  

USA Today Tackles Prenatal Ds Testing; Turns to Experts at MDSC
 
The MDSC was proud to collaborate with USA Today on a national piece they did highlighting the implications of new prenatal blood tests. The story looked at how the lives of the 250,000 Americans with Down syndrome today are radically different than a generation ago. In her reporting, Liz Szabo spoke to Family Support Director Sarah Cullen, SAAC member Melissa Reilly, First Call Parent Melanie Perkins McLaughlin, Board member Dr. Brian Skotko, and athlete and philanthropist Karen Gaffney.

We were thrilled that Liz not only reported the main story that appeared in print, but also an online companion piece. She also hosted a Twitter chat on the subject with the hashtag #prenatalchat. Here are those three pieces

USA Today is just one of the many major media outlets turning to the MDSC to make sense of these new tests and the ethical dilemmas expectant couples now face. Our First Call program is now considered one of the leading programs in the U.S. working with expectant couples and providing them with information and supports that they need at the time of diagnosis.

INFORMATIONPARTICIPATESUPPORT USRESOURCES
Attend an EventDonate NowNew Parents
Host a FundraiserMemorial/ Tribute GiftsExpectant Parents
AdvocateCorporate PartnershipsSupport Groups
Legislative PlatformStay ConnectedSponsorshipsEducators
 VolunteerCircle of Giving SocietySelf-Advocates