***** UpSide Weekly No. 34 *****

Housing, Recreation, Job Resources for Self-Advocates Now Available

Whether in the realm of Housing, Employment or Social/Recreation, self advocates and their families in our community are fortunate that there has been an exponential growth in resources in recent years. However, the potential options can also be overwhelming.

That's why we've compiled a list of a few resources that we've heard positive things about.

In our role as a clearinghouse of Down syndrome resources and information for families, we want to help you navigate the maze of options available to self-advocates and their families.

We hope you will find these helpful as your loved one with Down syndrome plans for the future and creates his or her own unique, fulfilling, and meaningful life.

Please note that we provide these links as a resource for families but this does not constitute an endorsement of any specific service.

Education Forum Sessions to Mirror New Ed Manual

Mark your calendar to join hundreds of parents and educators on Tuesday, Nov. 18 in Worcester at our 10th Annual Educator's Forum, where you will be treated to a full day of presentations by experts in the field of educating students with Down syndrome. A range of stimulating workshops will bring to life the best practices for educating students with Down syndrome in an inclusive classroom.

This year's breakout sessions will mirror the content of our soon-to-be-released comprehensive Educator's Manual, "Meaningful Inclusion for Students with Down Syndrome - A Resource Guide for Elementary Educators"

This year's Keynote Speaker is Dr. Bill Henderson, the recently retired principal of the O'Hearn School in Dorchester, MA (which has been renamed the William W. Henderson Elementary Inclusion School). Dr. Henderson is a disability advocate and author, most recently, of "The Blind Advantage: How Going Blind Made me a Stronger Principal and how Including Children with Disabilities Made the School Better for Everyone."

Stay tuned to email updates and our Facebook page for more information!

Community Fundraisers Past & Future Help MDSC

Community Fundraiser Spotlight

Special thanks to MDSC Board Member Louise Borke for hosting a CAbi Party through sales representative Cheryle Joyce, who is kindly donating a percentage of proceeds back to MDSC. Louise put a unique spin on the percentage of proceeds fundraiser by inviting friends and community members to her home for a fun fashion night with friends!

Upcoming Community Fundraisers

On September 4th, Danielle Thompson is hosting a ladies night through SkinnySchool in Westford, which is donating a percentage of proceeds back to MDSC.

On September 15, Samantha's Harvest hosts its annual Charity Golf Open at the Renaissance Golf Club in Haverhill. The tournament is an 18-hole, scramble format with shotgun start and prizes for the top three teams. Event also includes dinner, raffle items, silent auction and a live auction hosted by Boston comedian Tony V. The tournament is Samantha's Harvest's largest fundraising event. A portion of the proceeds supports the MDSC. See here for more information and registration.

On September 26th, Michelle and Matt Robertson are holding the 1st Annual Brady Strong Golf Classic in honor of their son Brady who has Down syndrome. The golf tournament will be held at Bradford Country Club beginning at 11am. All proceeds will benefit MDSC. To sponsor, register as a golfer, or learn more about the event visit here.

On September 27th, Alicia and Sean Taylor, Buddy Walk team captains of Luke's Rough and Rowdy Crowd (pictured above) are hosting the 2nd Annual Rodeo at the Tewksbury Elks from 6-10pm. There will be raffles, a silent auction, and a 50/50 raffle. 50% of the proceeds will benefit MDSC. For more information contact Alicia here or like them on their Luke's Rough and Rowdy Crowd Facebook page.

If you would like to organize your own community fundraiser or want more information, contact Becca Canavan at communityfundraisers@mdsc.org

MDSC Grandparents Gather Across Mass.

Grandparents play an important and special role in families! Please join us for informal get-togethers in supportive atmospheres where you can meet other Grandparents, learn more about Down syndrome and discover and share helpful resources.

NORWOOD

Second Saturday of each month

September 13, 2014

October 18, 2014

November 8, 2014

January 10, 2015

10 - 11am

Norwood Public Library

33 Walpole Street (Route 1A)

Norwood, MA 02062

RSVP TO: Kathy Lapsley

dsgrandsnorwood@yahoo.com

CENTERVILLE

Saturday, September 6

Saturday, November 1

10 - 11:30am

Centerville Library

585 Main Street

Centerville, MA 02632

RSVP TO: Barbara Shermanbarbarasherman@gmail.com

Note: The Grandparents will be meeting to walk together at the MDSC Buddy Walk by the Sea in Falmouth on Sunday, July 27 at 9:30am - see www.mdsc.org for more details

WILBRAHAM

Wednesday, August 27, 2014

Wednesday, September 24, 2014

Wednesday, October 22, 2014

7 - 8pm

Wilbraham Public Library

Crane Park (off of Main Street)

Wilbraham, MA 01095

RSVP TO: Sue Laing

dsgrandparents@gmail.com

BOSTON

Meets Quarterly

Contact Roberta Hoke for details

617-296-9133

punzel1241@aol.com

Have Fun & Create Awareness at a Fall Buddy Walk

Register Your Team Today & Start Making a Difference!

Nothing represents the spirit of our community more than our Buddy Walks. That's because having Down syndrome and loving someone with Down syndrome means wanting to celebrate it and spread the word about how our loved ones are incredible people both individually and collectively.

This fall, we have two Buddy Walks, each with their own distinctive personality, where you can experience the power and beauty of what it means to be members of the Down syndrome community.

Buddy Walk & Harvest Fair - Uxbridge

Join us September 21 at River Bend Farm for this 2nd annual autumnal-themed event. Last year's inaugural event was a huge success and we're going to take our Central Mass. walk to a new level this year.

We'll have a temporary tattoo parlor, haunted bingo and scarecrow-making tables. And Knucklebones returns with a slew of games and activities for every child and more than a few adults:

Pumpkin Ring Toss
Hula Hoop Hoopla
Spider Web Bean Bag Toss
Corn Hole
Giant Bubble Blowing

REGISTER TODAY!

Buddy Walk & Family Festival - Wakefield

Join our biggest fundraising and awareness event every year, our Buddy Walk & Family Festival. Now in it's 18th year, this celebration takes place on Sunday, Oct. 12, the perfect time to celebrate Down Syndrome Awareness Month with family and friends.

It's a real party atmosphere with tons of activities for the kids (music making, face-painting, fire truck to climb) and a stage packed with acts throughout the day that are empowering and entertaining.

For the second year, we'll have a variety of food trucks on site to give you a range of lunch options whenever you get hungry. We are also proud to welcome back our dear friend Ayla Brown, the Nashville-based country singer with local roots, and the incredible dancers from the Boston Ballet's Adaptive Dance class. New to the stage will be WBZ-TV anchor Jonathan Elias, who will emcee the day and Flame, an inspiring New York-based rock band whose 11 members each have a disability!

Join either or both of our Buddy Walks in 2014 to support our mission and make a difference for your loved ones.

27 Champions Win Falmouth Road Race (for Down Syndrome Community)

It was a banner weekend for the MDSC as 27 runners took to the streets of Falmouth to support our loved ones with Down syndrome at the historic Falmouth Road Race.

The weekend festivities kicked off with a pre-race luncheon at the Flying Bridge restaurant on the Falmouth waterfront, which was attended by most of Team MDSC and their families. Katie DeVellis, whose father, sister and cousin ran the 7-mile race, spoke to why participating in the fundraising and awareness is so important and offered words of encouragement.

Then, there was race day, Sunday, August 17, when more than 12,000 runners left Woods Hole headed on a winding, hilly route to Falmouth Heights.

It was amazing to hear the inspiring stories of each of our runners: 79-year-old Nancy Wilson running with her daughter Linda in honor of her granddaughter Rose, who has Down syndrome; our youngest runner, 15-year-old Mary DeVellis and her father Jim running for their sister/daughter Katie; teacher Emily Winsor running in honor of her students, including 6-year-old Dylan Cruz; Emily LaMarca, who continues a multi-year streak of running Boston Marathons and Falmouth Road Races in honor of her 8-year-old son Cole; Danny Roads, the father who has run for the past 6 years for the MDSC pushing his son Tommy in his wheelchair; the Heffernan sisters, Evie and Maggie, running on behalf of their brother, Brian; Allison Gandhi running in memory of her son Deven; two MDSC staffers, Becca Canavan and Josh Komyerov, supporting their organization, and many other great stories.

You can read more about each of these competitors here, and you can still donate to their effort here. Just click "sponsor runner" and plug in their name. Or make a General Donation to support all our programs and services.

Lisa Adelman of Westminster

Danielle Athanasiadis of Lexington

Becca Canavan of Allston

Mary DeVellis of Lexington

Jim DeVellis of Lexington

Allison Gandhi Newton

David Granfors of Holliston

Robyn Granfors of Holliston

Stephen Hawley of Northhampton

Evie Heffernan of Newton

Maggie Heffernan of Newton

Allison Hogan of Woburn

Josh Komyerov of Somerville

Emily LaMarca of Clinton

Melissa Leslie of Worcester

Linda Letourneau of Marston Mills

Shannon Paul of North Attleboro

Chris Petkewich of Leominster

Michael Pettinella of Grafton

Mary-Kathryn Quinn of Stow

Danny Roads of Marblehead

Tommy Roads of Marblehead

Kyle Ross of Dartmouth

Susan Stratoti of West Bridgewater

Nancy Wilson of Marston Mills

Emily Winsor of Dorchester

John Timmerman of Charlestown

Self Advocates Catch Baseball Fever at Spinners Game

The MDSC's Self Advocate Advisory Council held its quarterly social at a Lowell Spinners game recently. The Spinners are the Single A affiliate of the Boston Red Sox.

We want to thank Jon Boswell of the Lowell Spinners for arranging an information table for the SAAC/MDSC and the opportunity to hold a 50/50 raffle!

The Self-Advocate Advisory Council (SAAC) an MDSC initiative to give voice to self-advocates. The SAAC is open to any adult with Down syndrome 21 years old and older who has an interest in developing leadership and self-advocacy skills. Visit here for more information.

Parents First Call Takes Its National Model to Virginia

In recent years, MDSC Family Support Director Sarah Cullen has traveled throughout the country sharing her expertise on how to launch, expand and improve a Parents First Call Program, one of the MDSC's signature programs that provides critical support for new and expectant parents.

Earlier this month, Sarah took the MDSC's national model to Virginia, now the 11th state to benefit from Sarah and the MDSC's expertise. She offered a 5-hour training to members of the Down Syndrome Association of Hampton Roads. For more information on the MDSC's Parents First Call Program, visit here.

Sarah has also continued to provide outreach to medical students to humanize people with Down syndrome and share best practices for caring for patients with Down syndrome. Sarah and her son Matthew, a self advocate, joined Genevieve Rattey and her family, addressing 125 first-year medical students at UMass Medical School. Perhaps the most important lesson was letting them see first-hand that people with Down syndrome are "people first." For more information on the MDSC's medical outreach, visit here.

Upcoming Events

New Family Social at MDSC Conference Room (photo above)

Saturday, September 6 10 AM - 12 PM

Grandparents & Siblings Welcome

20 Burlington Mall Road, Burlington, MA

RSVP to Sarah Cullen at scullen@mdsc.org

More information

Transition from School to Adult Life

Saturday, September 20 from 8 AM to 4 PM

All-Day statewide conference for families

College of the Holy Cross, 1 College Street, Worcester, MA

More information and registration

Sibshop for Brothers & Sisters

Saturday, September 20, 3 to 5 PM

The Arc of Bristol County, 141 Park Street in Attleboro

RSVP to Shannon Paul with children's ages

More information

MFOFC's Building a Home Conference

Saturday, September 27 9 AM to 4 PM

DCU Center, 50 Foster Street, Worcester, MA

with Keynote Speaker Michael Kendrick, PhD

More information and registration

Research Opportunities

The MDSC is dedicated to ensuring that all members have information about and access to the latest research opportunities. See below for a summary of the current opportunities for participation that have been approved by our Medical & Scientific Advisory Council. For a fuller description on each study including contact information and how to apply, see here.

Evaluation of children's play as a developmental process across the age span of 8 months to 5 years

Karin Lifter, Ph.D., Department of Counseling and Applied Educational Psychology, Northeastern University

Genetic disorders in children: An assessment of parental coping strategies and positive growth (survey)

Jane Goodwin, University of Newcastle (Australia)

Health U - Weight Loss for Teens with Intellectual Disability

National Institute of Health (NIH) through the Shriver Center at UMass Medical School.

Children's Mealtime Study for Children Ages 3 - 8

E.K. Shriver Center/UMass Medical School

Prenatal MRI Study of Fetuses with Down Syndrome

Mother Infant Research Institute at Tufts Medical Center

Family Conceptualizations of Career Development for Their Children with Moderate to Severe Disabilities in Middle School and High School

School of Education at Boston University, under the direction of Dr. V. Scott Solberg, and supported by the Office of Disability Employment Policy in the United States Department of Labor (ODEP) and National Collaborative on Workforce and Disability for Youth (NCWD-Y).

Exploring Fathers' Roles and Experiences with Dissemination of Sexual Health Information to their Children with Down syndrome

Lillian Torrey, graduate genetic counseling student at Boston University

Project TEAM Study for Teens and Young Adults Ages 14 - 21 with Developmental Disabilities

Project Team (Teens making Environment and Activity Modifications), Boston University

Clinical Trial to Evaluate the Safety of a Study Drug and the Way It Works in the Body with the Possibility of Improved Cognitive Capacities in People with Down Syndrome

Dr. Brian Skotko, MassGeneral Hospital Down Syndrome Program

Diagnostic Reading Profiles of Children with Down Syndrome

Dr. David Koppenhaver, Appalachian State University

Relationship between use of manual sign before spoken language skills develop and literacy acquisition (survey)

Carrie Ormsby, graduate student in Speech-Language Pathology at Idaho State University

Empowerment, thoughts and beliefs, and mood among adult siblings of individuals with intellectual and developmental disabilities (survey)

Mamta Saxena, MS, Doctoral Student, University of Connecticut

Birth to Three, then what? Early Intervention's role in the inclusion of children with Down syndrome (survey)

Sara Wesner and Sophia Hosterman, undergraduate students at Indiana University of Pennsylvania Undergraduate

Should Infants with Down Syndrome be Screened More Frequently for Thyroid Dysfunction?

Dr. Penny Feldman and Dr. Mary Lee, Pediatric Endocrinologists at UMASS Memorial Children's Medical Center

Employment/Unemployment/Jobs for People with Down Syndrome (survey)

Dr. Libby Kumin of Loyola University Department of Speech-Language Pathology/Audiology

Trinque Family, EchoStor Technologies Partner with Sox, NESN to Support MDSC

During the month of July, EchoStor Technologies, a Boston-based data storage and management solutions provider and consulting firm, partnered with the New England Sports Network on a promotion to benefit the Down syndrome community.

Through the month, EchoStor pledged to donate $50 to the MDSC for every Red Sox hit. In addition, EchoStor partnered with the New England Sports Network, which raised awareness by mentioning the promotion throughout the month during Sox broadcasts and on its Twitter feed!

This incredible promotion would not have been possible without the support of Scott Trinque, president of EchoStor. Scott and his wife Gail have a 9-year-old child, Theo, who has Down syndrome, and Scott serves on the MDSC Business Advisory Council. "The MDSC has a special place in our hearts and we are grateful to be able to give back," Scott said.

As for the Red Sox's performance, it appeared to be a win-win for the Sox and the MDSC for much of July. Sox bats came alive through the mid-month All-Star break, including a 17-hit outpouring against the Blue Jays on July 21 that raised $850 in one game! Unfortunately, their momentum fizzled from there on as did their standings in the AL East. The Sox did compile 213 hits in July, raising more than $10,000 for MDSC programs and services for people with Down syndrome and their families.

On September 8, Scott and Theo will be presenting the MDSC with a check during the pre-game ceremonies at Fenway. Thanks Scott and EchoStor for making this happen and NESN and the Red Sox for their support!

INFORMATION	PARTICIPATE	SUPPORT US	RESOURCES
About the MDSC	Attend an Event	Donate Now	New Parents
About Down Syndrome	Host a Fundraiser	Memorial/ Tribute Gifts	Expectant Parents
Programs	Advocate	Corporate Partnerships	Support Groups
Legislative Platform	Stay Connected	Sponsorships	Educators
	Volunteer	Circle of Giving Society	Self-Advocates