MDSC Masthead
UpSide Weekly No. 27
Part-time Internship at MDSC
Nutrition Study Seeks Partiipants
Call for Education-related Photos
Deadline Nears for MDSC Awards Nominations
Bring our 2014 Champions Theme to Life
MDSC Upcoming Events
Two Ways to Be Boston Strong
Visitors from Brazil Learn from the MDSC
January 29, 2014 | No. 27
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Thanks to our Sponsor
Part-time Internship Opportunity at MDSC

 

The MDSC seeks a Development & Communications Intern in our Burlington office to assist the MDSC on projects and tasks associated with our statewide Buddy Walk Program. The 10-20 hour/week position will help with various fundraising initiatives, public relations activities, and other operational duties related to promoting the acceptance and inclusion of people with Down syndrome.

 

The intern will be responsible for the following duties: 

  • Assist in developing and implementing new fundraising activities and initiatives
  • Assist in writing articles for the MDSC newsletter, website, and press releases
  • Assist in getting media placements for MDSC stories
  • Assist in developing relationships and partnerships with corporations and foundations
  • Assist in grant research activities
  • Assist in developing marketing campaigns with the goal of recruiting new individuals, groups, and corporate partners to attend and volunteer at upcoming MDSC events/programs
  • Perform other duties as assigned 

For complete information, including application instructions, please see our posting on Idealist.org. 

Kids Mealtime Study Seeking Participants

 

A nutrition research study is looking for children with intellectual/ developmental delays ages 3-8. The purpose of the Children's Mealtime Study is to learn about the eating patterns, mealtime behaviors, and parent feeding practices of children ages 3-8 years who are either typically developing or have an intellectual/developmental delay. 

 

The study involves one 2-3 hour visit at a UMass Medical School-affiliated site and parents complete a 3-day food record at home. During the visit children and parents are weighed and measured and parents complete a series of questionnaires on child eating patterns, behaviors, and their own feeding practices.  Parents also receive training on keeping a food record at home to record what their child eats over three days.   Children with intellectual/developmental delays will receive cognitive testing and parents will answer additional questions about children's developmental, adaptive, and social behavior.

 

Parents will receive up to $85 compensation in the form of a gift cards; children will receive a $15 gift card for their participation. For more information contact Alyssa at 774-455-6521 or email her.  See the website here. UMMS IRB Docket # H00001420

Share Your K-6 Ed Photos for Publication

 

Do you have an inspiring photo of your loved one with Down syndrome in an educational setting that you're willing to share? 

 

Then send it to us for possible inclusion in our first Educators Manual, to be published early next year. 

 

We need pictures of elementary school children (grades K-6) to bring the manual to life. You're child could be doing virtually anything: 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.  

 

Please complete this photo release form for each individual pictured (including your own child, other children, classmates or educators). Email Joshua Komyerov, Communications & Operations Director, with any questions. 

 

Our Education Task Force has been working on the comprehensive Educator's Manual for more than two years. The Manual includes best practices to guide educators in making the accommodations and adaptations necessary to best teach students with Down syndrome. 

MDSC Hosts First-ever Support Group Retreat
25 Leaders from Across State Bolster Ds Community
Support Group Leaders Jessica Melville, Rachel Dunbar, Brandi Kunselman and Dawn Nichols were among those who participated in the Support Group Leader Retreat last weekend.
 

Last weekend 25 leaders in the Down syndrome community from across the state came together for our inaugural Support Group Leader Retreat, organized by the MDSC. Starting Friday evening and continuing throughout Saturday morning, MDSC's Executive Team, Maureen Gallagher and Sarah Cullen led the group to share their experiences and expertise and strategize about ways to strengthen the Down syndrome support groups across the state.

 

These groups, which you can see here, play an integral role on the local level, as it is through these groups that MDSC members are welcomed and supported on a very personal level ~ having the opportunity to meet other families face-to-face, develop meaningful relationships, and share information and resources. The MDSC is proud of the support group leaders we partner with and believe that the retreat was a significant step in collaborating more closely together to best meet the needs of families across the state. 

 

In the wake of the retreat, the MDSC, as the statewide umbrella organization, is implementing several strategies based on participant feedback. In order to build alliances among support groups for the benefit of our members, the MDSC will: 

  • start a newsletter that will be sent to Support Group Leaders around the first of each month
  • begin bimonthly Support Group Leader conference calls
  • implement a system for helping support group leaders get the word about activities and meetings to counterparts and the general public
  • hold at least annual Leadership Training workshops for Support Group Leaders to develop additional skills in areas such as communication, leadership, and conflict resolution.

As stated in our mission, the MDSC is committed to ensuring that families and individuals with Down syndrome have the local supports and resources they need. Toward that end, we appreciate the continued leadership and collaboration of each of these local Support Group Leaders. Their commitment to working with the MDSC and the Down syndrome community across Massachusetts is unparalleled. We are thrilled about the ideas generated as we all work together to achieve our common goals. 

 

John Anton, recipient of the 2013 Allen C. Crocker Award of Excellence. 
Deadline Nearing for MDSC Award Nominations
Do You Know Someone Who Deserves Recognition? 
 

Is there someone in your life or the life of your loved one who is deserving of one of the MDSC's Annual Awards? Don't miss the opportunity to nominate them. The deadline for submission is just around the corner, Feb. 7. 

 

The winners will be announced at our 30th Annual "Champions" Conference on March 22, where they will be publicly recognized. The awards include: 

  • Outstanding Educator Award for an educator in Massachusetts who has significantly contributed to ensuring that students with Down syndrome are given every opportunity to maximize their full potential 
  • Media Award for a person or company who exemplifies the MDSC's mission to disseminate up-to-date information about Down syndrome 
  • Allen C. Crocker Award of Excellence, the highest award offered by the MDSC, for the person who most advances the Down syndrome movement.

Read more about these awards and link to nomination forms here.

 

 

 

Brittany Dorwin has wanted to be on the cheerleading squad since her freshman year of high school. Now, as a senior, she was finally able to fit it into her schedule. "She was our champion on the football field," her mom said. 
 

Call for Photos of the Champion in Your Life! 

Bring 2014 Annual Conference Theme to Life

 

In 2012, we showed the world what "Style Down Syndrome" really means. In 2013, we celebrated the "Real Lives" of people with Down syndrome. 

 

Now, in 2014, we have a new theme.... CHAMPIONS!

 

We've got the World Series Champion Boston Red Sox. We've got our resilience in the wake of the Boston Marathon tragedy. And, we've got 5,000 people with Down syndrome and their families across the Commonwealth, each of whom are winners in their own right. 

 

Help us bring our Champion theme to life with your photos! Send them to MyChampion@mdsc.org. We will be using your photos for our 30th Annual "Champions" Conference on March 22 at the DCU Center in Worcester. 

 

Please note that when we say Champion, we mean it in the broadest possible sense. Whatever your loved one does - whether it's singing, dancing, drawing, voting, singing, working, laughing - we're certain they do it like a champion. 

MDSC UPCOMING EVENTS 

  

Complex Needs Support Group  

Saturday Feb. 8, 10 a.m., Children's Hospital Waltham
Does your child have Down Syndrome and Autism? Not sure? Join the discussion as our Complex Needs Support Group meets on Saturday, Feb. 8 at 10 a.m. at Children's Hospital Waltham. The session is open to all families with children with complex needs, though the meeting will have a particular focus on the co-occurrence of Down syndrome and autism. If your loved one has a co-occurring diagnosis of Down syndrome and Autism or you're wondering whether your child with Down syndrome may be affected by an autism spectrum disorder, join us. The Down Syndrome Autism Connection (DSAC), an affiliate of the MDSC, will be heading up the meeting. They provide education, support and inspiration for the DS-ASD journey. RSVP required: Email scullen@mdsc.org if you would like to attend. See here for complete information.

   

A Full Life Ahead Series
TODAY, Jan. 29, 7 p.m. MDSC Office, Burlington
Join Nancy Hurley, Training Specialist with the Institute for Community Inclusion (ICI), on Jan. 29 as she leads us in a discussion on why connecting with your community is necessary to help create a full life for your loved one. The Community Mapping workshop will be held Wednesday, January 29, and is part of the MDSC's Full Life Ahead Series in collaboration with MFOFC. 

Practical action starts with the understanding that every community has more potential resources than any one person realizes. Join us to network, focus on assets, identify opportunities, and look at the possibilities within our communities with new eyes. Nancy has worked with individuals with disabilities for more than 25 years. She is currently coordinating the Transition Planning series of graduate level online courses offered through DESE's Focus Academy. The session will be held from 7 to 9 p.m. at the MDSC Office at 20 Burlington Mall Road, Suite 261, Burlington, Mass. Come learn how to build a healthy, vibrant community. RSVP to Susan Nadworny at snadworny@riversidecc.org. Space is limited. 
 
Education Webinars 
Feb. 5 and Feb. 11, 7:30 p.m. 
The MDSC is pleased to announce two upcoming webinar workshops for families on February 5 and February 11. During the first session, titled "Working Effectively With Your IEP Team - A Special Educator's Perspective", parents will from an experienced special education teacher about issues and questions that are commonly asked by families as they journey through the IEP development process and advocacy for their children. We will cover the importance of crafting a powerful vision statement, how to deal with difficult behaviors, and how to advocate for effective home-school communication. Register for the Feb. 5 session here. Stay tuned to our Facebook page for registration information for the Feb. 11 sessions. 
 
D.A.D.S. Meeting with Dr. Skotko (rescheduled) - RSVP TODAY
Feb. 5, 7 p.m., Framingham Beer Works
The January D.A.D.S. meeting with Dr. Brian Skotko that was postponed due to a winter storm has been rescheduled for Wed. Feb. 5 at 7 p.m. (doors open at 6:30) at Framingham Beer Works (348 Cochituate Rd. Framingham, Ma). Space is limited (40 seats max. 4 seats left) and RSVP's are required (please contact Jeff Roback at dadsmass@yahoo.com). RSVP's must be made by Wed. Jan. 29. Cost per person is $20 and includes appetizers and dinner. Unrelated to our special guest will be a general discussion concerning the use of the "R" word and its implications and impacts on the Ds community.
 
Advocates in Motion, Teen & Young Adult Program, Events
Feb. 1, Feb. 9, Feb. 14, and Feb. 23

   

Winter weather won't be stopping our Advocates in Motion program this February. All 13-22 year olds with Down syndrome are invited to join the AIM program so they can attend one or more of these events.  

  • Saturday, Feb. 1 from 6 -8:30 p.m. at the Wellesley Community Center. Our AIM Holiday Party in December was snowed out, so we hope you can join us on this rescheduled date for dinner, dancing, and fun with friends! A parent party with dinner and the chance to network with one another will be held at the same time. RSVP today to aim@mdsc.org 
  • Sunday, Feb. 9 from 12:30-3:30 p.m. at the Newton YMCA. AIM will hold a youth session titled, "Communicating our Health Needs." It's not always easy to let others know how you feel or what you need. We will learn about different ways people communicate (talking, sign language, technology, body language), and we will practice using different communication skills to help us live a healthy life. At the same time and location, AIM parents can learn about "Legal Matters & Government Benefits" from Stacey Leibowitz, Director of Family Services at CLASS, Inc. and VP of the MA Council for Adult Foster Care.   
  • Friday, Feb. 14 from 5 to 7 p.m.. Join AIM for a field trip to the Let's Get Creative  Art Studio in Beverly for an evening of art and food, including a fun, Valentine-themed art project followed by pizza and frozen yogurt! 
  • Sunday Feb. 23 at 3 p.m. Join AIM on a field trip the Boston University Women's Ice Hockey Game as they take on Boston College. The game is at 3 p.m. at Walter Brown Arena in Boston. 

Some of these activities have limited enrollment, so email now to join the AIM program. 

 
Grandparent Socials
Saturday, Feb. 22 (Centerville) and Feb. 12 (Wilbraham), 

Grandparents of children with Down syndrome are warmly invited to join us for our grandparent socials, informal get togethers where you can share and care, and ask any burning questions you may have. Come meet other grandparents and learn more about the MDSC and helpful resources. Grandparent socials are scheduled in two locations: 

  • On Saturday, February 22 from 11:00 a.m. - 12:30 p.m. in the conference room of the Centerville Library, 585 Main Street Centerville, MA. All grandparents of children with Down syndrome are welcome. RSVP to Barbara Sherman at barbarasherman@gmail.com or mdsc.grands@comcast.net  Also, save the date for another Grandparents Social on Saturday, March 29 at the same time and location.   
  • On Wednesday, Feb. 12 from 7 to 8:30 p.m. at Wilbraham Public Library at Crane Park (off Main St.). RSVP to Sue Laing at dsgrandparents@gmail.com. Also, save the date for another Grandparents Social on Saturday, March 26 at the same time and location.    

2 Ways to be 'Boston Strong' - Support People with Down Syndrome this Marathon Season

  

Donate to MDSC Champions Marathon Team 

If you can't run 26.2 miles to support your loved ones with Down syndrome, no worries. These brave souls are doing it for you: Ivana Culic, Emily LaMarca, Sarah McKitterick, Josefina Oliva, Kari Olsen, Holly Salegna, Andrew Thompson, Jim & Colby Wagoner, Meghan McAuliffe & Kristine Cox. Our Champions Marathon Team are already getting out there in the wee small hours (even in weather like this) to champion the acceptance and inclusion of people with Down syndrome. Please help support their individual journey and their collective effort to support the real lives of people with Down syndrome. Go here to give.

  

Is 26.2 miles too far.... How about 5K? 

Much as you want to support people with Down syndrome by running a marathon, that is simply not possible for most of us. No worries... we have a more manageable way for you to hit the road for the our cause. Join the MDSC Champions Team as part of the Boston Athletic Association's Annual 5 kilometer race. The April 19 race coincides with Boston Marathon weekend and is a great way to be involved in the excitement and sense of community that engulfs the Marathon. Get your Boston Strong on and race for MDSC! Fundraising minimum of $500 required. E-mail Becca Canavan at bcanavan@mdsc.org by January 30th for more information.  

Parents First Call Program Continues Role as National/International Model
Monica Xavier and Claudia Moreira of the Instituto Alana in Brazil with the MDSC's Maureen Gallagher (far left) and Sarah Cullen (far right)

 

Our Parents First Call Program, which provides parents with round-the-clock resources and supports for new and expectant parents after they receive a Down syndrome diagnosis, has continued to establish itself as a national model with Family Support Director traveling around the country training advocates. Now, especially in the last year, we have had an international influence as well. Earlier this month, our First Call Program played host to the Alana Institute of Brazil, as Sarah conducted a special 2-day training for them in our office.

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