***** UpSide Weekly No. 36 *****

SAVE THE DATE: Annual Conference, March 28, 2015

Mark your calendars for the MDSC's 31st Annual Conference on March 28, 2015. Yes, it will be held a week later than usual, but as always, it will feature experts from around the region and around the nation presenting on a spectrum of issues related to how to best serve our loved ones with Down syndrome.

Registration will open in January and we hope you can join us for a day that promises to be equal parts inspirational and educational.

Time to Pass ABLE Act Is During November Session

Federal lawmakers return to post-election business on November 12, and according to our national partners at NDSS, this period is prime time to pass the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S.313).

Known as a "lame-duck" session - because many legislators will be on their way out of office as a result of next Tuesday's vote - many expect it be productive, and we need to get the ABLE Act on their radar now!

Here in Massachusetts you have worked hard to garner the formal support of each and every member of our Congressional Delegation for what is our legislative priority on Capitol Hill.

Still, nationally, there is still work to do and our Bay State senators and congressmen help get the ABLE Act to the floor for a vote and across the finish line.

What you can do

Find the contact info for your federal legislators here.
Call or email their offices and ask them to do everything they can to pass the ABLE Act.

Just ask them to let their leaders know that the time to pass the ABLE Act is now. Help bring it to a vote so they can make a real difference in the lives of thousands of people with disabilities throughout Massachusetts and the country.Read more about the ABLE Act here.

Upcoming AIM Adventures: Pizza, Bowling & Kayaking

Sunday, November 2nd

*Pizza & Bowling*

6pm @ PiNZ!, 110 South Main St, Milford

Join AIM youth and families for this fun night! FREE for AIM members and their families. $15/pp for non-members

RSVP by 10/30 to Colleen at cendres@msdc.org

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Sunday, November 16th

November AIM Meeting

*The Nina, the Pinta and the Kayak?!*

12:30-3:30

Newton YMCA

276 Church St, Newton

This indoor kayaking session is open to registered AIM members only. Limited spots available!

Reserve your spot! RSVP to Colleen at cendres@mdsc.org

The Massachusetts Down Syndrome Congress' AIM: Teen and Young Adult Program is for youth ages 13 to 22 and their families. They get together during the school year to have fun, meet peers, and learn new things! Contact Teen & Adult Services Director Colleen Endres for more information at cendres@mdsc.org.

Join MDSC Marathoners to Run for a Cause & Yourself

Once again in 2015, the MDSC is proud to participate in the John Hancock Non-Profit Boston Marathon Program.

We have been fortunate year after year to have passionate and committed runners supporting our cause and promoting acceptance and inclusion for individuals with Down syndrome while fulfilling a dream of a lifetime - running the Boston Marathon!

Runners seeking a bib must raise a minimum of $7,500. We are also looking for qualified runners to join our team (with different fundraising requirements). See an application here and email race@mdsc.org for more information.

Self Advocate Council Tackles Fame and Fortune

SAAC Social: Karaoke Night!

The MDSC's Self Advocate Advisory Council (SAAC) is hosting a karaoke night for adults 21 and up with our friends from the Best Buddies Chapter at Bentley University. Join us for a night of singing, dancing, dinner and FUN!

Saturday, November 8, 5-8pm, Bentley University, 450 Beaver St, Waltham

SAAC Workshop: Financial Literacy (How to Manage Money)

The SAAC is hosting a workshop to help adults learn how to manage their money. Self-advocates ages 18 and up and a trusted support person are encouraged to attend!
Wednesday, November 12, 6:30-8:00pm , MDSC Office, 20 Burlington Mall Rd, Burlington.

Includes dinner and networking and an hour-long workshop.

Registration required for both events! Contact Colleen Endres, MDSC Teen and Adult Services Director, at cendres@mdsc.org or 781-221-0024 x207.

SAAC members Tiffany Moore (left) and Jillian Berube at the Buddy Walk with singer Ayla Brown.

GOVERNOR SIGNS LONG-AWAITED NBC & REAL LIVES BILLS AT FENWAY

After a decade of hard-fought advocacy for legislation that promised - in very different ways - to change the landscape of disability services in Massachusetts, Governor Patrick last week signed the National Background Check (NBC) Bill and Real Lives Bill into law. It was the perfect way to wrap up Down Syndrome Awareness Month in Massachusetts!

At a ceremonial signing at Fenway Park on Thursday, Governor Patrick, surrounded by Beacon Hill leadership, including Speaker of the House Robert DeLeo and Sen. President Therese Murray, put pen to paper to mark the glorious occasion.

"It was just about six months ago when the MDSC had it's very first Advocacy Day at

the State House," said Executive Director Maureen Gallagher. "People turned out in full force and you've done it again today.... to say that you were here when the Massachusetts Legislature stood up and said that people with disabilities deserve to have meaningful, fulfilling lives in the community and that there is policy in place to make sure they are successful."

Over the last year, the MDSC spearheaded a cross-disability coalition to recraft, re-file and re-energize backing for the NBC Bill, which had previously stalled in the State House for several sessions. The new law will require those working with people with disabilities under state-funded contracts to undergo a federal background check in addition to the state checks currently mandated.

See here for more information about both bills and the lengthy list of everyone who help shepherd the NBC Bill through the legislature. And check out our YouTube video playlist for the complete footage of the occasion, including speeches by MSDC Advocacy Specialist John Anton, Gov. Patrick, Speaker DeLeo, President Murray, Rep. Tom Sannicandro and Kay Khan, and Sen. Michael Barrett.

MDSC Exec. Director Maureen Gallagher Remarks at Fenway Bill Signing

REGISTER NOW: 10th Annual Educators Forum Less than 3 Weeks Away... Early Bird Rates Expire on November 7!

Launch of Ed Manual to coincide with Forum; All participants receive copy

Join hundreds of educators and parents on Tuesday, Nov. 18 in Worcester at our 10th Annual Educator's Forum. The Ed Forum breakout sessions this year will mirror the content of our long-awaited education manual - Meaningful Inclusion for Students with Down Syndrome: A Resource Guide for Elementary Educators. The launch of the publication will coincide with the Ed Forum, and all attendees will receive a copy included in the price of the event.

This guide provides a comprehensive look at the complex learning profile of students with Down syndrome, as well as providing information around best practices and educational considerations that are based upon research-proven best practices.

Throughout the day, you will be treated to presentations by experts in the field of educating students with Down syndrome. A range of workshops will bring to life the best practices for educating students with Down syndrome in an inclusive classroom.

10th Annual Charity Hockey Game Nov. 23

Free Skate with the Family, Bid on Auction Items and Watch Bruins Alumni Take on MDSC All Stars

The MDSC All-Stars are sharpening their skates to face-off against the Boston Bruins Alumni to benefit people with Down syndrome for the 10th time! Root the All-Stars on during this yearly grudge match... and bring the whole family because you don't even have to be a skater to get in on the action.

This family-friendly event includes a Free Skate for novice and expert skaters alike and a meet and greet with Bruins legends where you can get their autographs. It all culminates with an action-packed game. But that's not all - Don't miss your chance to win great holiday gifts at our Silent Auction and Raffle. See below for more details!

Tickets

General Admission - $10.00

FREE for Children 12 & Under

Note: You can even attend the event for FREE if you pre-registered for any of our Buddy Walks or if you wear a hockey jersey (your school team or the Bruins) to the game!

12:00pm

Free Skate with Bruins Alumni

Silent Auction & Raffle Open

1:30pm

Hockey Game

Two Player Spots Remain - Live your fantasy and make a difference!

Two more spots are available for players want to live out their sports fantasy and face off against Boston Bruins greats. (Note: there is a fundraising minimum of $2,000.) Sign up now to join the MDSC All-Stars and find yourself playing head-to-head against Bruins greats like Terry O'Reilly, Bob Beers, Reggie Lemelin,

Glen Featherstone, Kenny Hodge, Rick Middleton, Tom Songin, Bob Sweeney, and Andy Brickley. (See the complete roster here.) The game is for ages 18+ with a few spots for 13-17 year olds. E-mail hockey@mdsc.org for more information.

19-year-old Joey Campagna, who has played in the match since he was 11, explains why he keeps coming back. "I participate in this event yearly in honor of my little brother Danny. Danny is 13 years old and was born with Down Syndrome. He has been such a big inspiration to me with his ability to overcome all obstacles that are placed before him. He works very hard with the goals that are set for him and succeeds at all of them! Your continued support of Danny & I through the past 7 years has been AMAZING!! So that I may continue my efforts for Danny & The MDSC I am calling on all of you once again."

18th Annual Buddy Walk & Family Festival

Thousands Gather, Dance, 'Walk for Champions', & Celebrate our Loved Ones Under Sunny Skies in Wakefield

It is said that nothing represents the beauty of our community like a Buddy Walk. That truism was once again evident on Oct. 12 at our 18th Buddy Walk & Family Festival presented by Verizon.

The amazing day started under sunny skies with all of you, more than 3,500 people - individuals with Down syndrome, their families, friends, teachers and other loved ones. Having worked so hard in your communities, you came together around beautiful Lake Quannapowitt to make a difference. It made perfect sense that it was dubbed the "Walk for Champions!"

We have seen throughout the MDSC's 30 years that each of our families are Champions of the Down syndrome movement here in Massachusetts, enriching your homes, neighborhoods, schools and communities.

The sea of team tents was evidence of how hard so many of our Team Captains worked. This year's Top 6 were Danielle Thompson from Team Drew's Crew, long-time Buddy Walk Chairs Kerri and Jon Tabasky of Team Tabasky, Danielle DeCotis from Team Matthew's Troops, Leah Campbell of Team Mia, Amy and Jeff Feinburg of Kayla's Klub and Beverly Beckham of Team Lucy.

Special thanks to Buddy Walk newcomers: our emcee, WBZ-TV anchor Jonathan Elias; singer-songwriter Alex Preston; Flame, the New York-based band each of whom happens to have a disability. And it wonderful to have veteran Buddy Walk performers back: Nashville-based singer Ayla Brown, going on her 6th year; Dave Skoletsky's GoTeam21, featuring his incredible jumping dogs like Yeager, and the fabulous Mister Vic. And thanks to all our sponsors (see a list at the bottom of this email).

The awareness and funds raised are essential to support the MDSC's ever-growing array of programs and services that help us serve you and achieve our mission of promoting acceptance and inclusion of people with Down syndrome. They enable the MDSC to continue to support new and expectant families; educate health care professionals about Down syndrome and how to deliver a diagnosis; provide social and leadership development for teens and young adults with Down syndrome; equip educators with best practices and resources; and advocate for legislation affecting people with Down syndrome on the local and national level. This year, we even celebrated landmark policy victories with the passage of the National Background Check Bill and Real Lives Bill!

Be sure to check out our video playlist of the stage events on our YouTube page and the work of our awesome volunteer photographers - Andrew Griffith, Mary Ellen McDonough, Steve Poulin and Chris May - on our Facebook page.

On behalf of our entire organization, thank you believing in our work. We're so appreciative for all that you've done and continue to do to make a difference in the lives of our loved ones with Down syndrome and their families.

First Call Program

Array of Upcoming Events for the Whole Family

Grandparents Get-Together - Nov. 1

Join our Centerville Grandparents Group Saturday, November 1, 2014, 10 - 11:30am at Centerville Library, 585 Main Street

RSVP to Barbara Sherman at barbarasherman@gmail.com

See information on all our grandparents group around the state here.

New Family Social - Nov. 1

Bring the whole family to our next New Family Social here at the MDSC office conference room in Burlington on Saturday, November 1 at the usual time - 10 a.m. to Noon. RSVP to MDSC Family Support Director Sarah Cullen at scullen@mdsc.org or 781-221-0024 ext. 206.And while you're at it, save these future dates for 2015!

Baby Sign Language Class - Nov. 21

Join us for a Baby Sign Language Class - Signing as a first language for children ages 5 months to pre-verbal at the MDSC office, 20 Burlington Mall Road, Burlington, Mass. on Friday, November 21, 2014 from 1 - 2:30pm. RSVP to Family Support Director Sarah Cullen at scullen@mdsc.org. See the flyer here for complete details.

Research Opportunities

Highlight: Project Play and Children's Mealtime Studies

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

Project Play - Northeastern University

Seeking to evaluate children's play as a developmental process across the age span of 8 months to 5 years. Karin Lifter, Ph.D. and her research team from the Department of Counseling and Applied Educational Psychology at Northeastern University are currently looking for families who live in the Boston metropolitan area and who have a child who is developing with a delay. Their goal is to develop a user-friendly instrument that teachers and providers can use to evaluate a child's progress in play, and particularly for children with delays and disabilities. The ultimate goal of their instrument is to be able to evaluate children's play for the purposes of designing interventions for them. Contact the Project Play team by calling (617) 373-3297 or emailing projectplay@neu.edu.

Children's Mealtime - E.K. Shriver Center/UMass Medical School

The Children's Mealtime Study is looking for children with Down syndrome, Fragile X, and/or other intellectual disabilities ages 3-8 to participate in a research study on children's eating patterns, mealtime behaviors, and parent feeding practices. 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. Parents will receive up to $85 compensation in the form of a gift cards; children will receive a $15 gift card for their participation. Contact Alyssa at 774-455-6521 or email Mealtimes@umassmed.edu.

The Journey to Acceptance from a Family That's Already Been to 'Holland'

by Nancy Whipple

We found out we were pregnant in February 2013. We were excited, but a little crazed because we had a daughter that was just 7 months old at the time!! Because of my "advanced maternal age" of 41, I was sent to the Maternal Fetal Health Doctors at Winchester hospital for my ultrasounds. I did the blood work, and went for the 12 week or so ultrasound. The tech left, and the doctor came in. I was waiting for the "everything looks great, you are at risk like a 21 year old" as had been the case with my previous two pregnancies. However, instead, she came in and said "we have to talk about the ultrasound".She said they found a very large cystic hygroma on the babies neck. I asked about the blood tests, and she said they didn't matter because of the ultrasound. She said a bunch of other things, I don't recall (it was a blur!) and handed us a piece of paper. It explained that they baby could have A. Down syndrome. B. Turner's Syndrome or C. Trisomy 13 or 18 which are "incompatible with life". She then sent us on our way. When we were in the car on the way home, my husband turned to me and said "I don't want another angel". You see, this baby would be our 3rd child. We lost our son Alexander on April 1, 2011 after a 13 month battle with Neuroblastoma, a kind of pediatric cancer.

Needless to say we were in shock. We had already taken that unplanned "Trip to Holland" and we didn't want to go on any more adventures! My regular OB called me that night and we talked for a little bit, but I had an appointment the next day. She had been my OB for my previous pregnancies (including an early miscarriage before Alexander) She knew that no matter what we would not terminate the pregnancy, and she said she would help us however we needed. I asked how bad it was, and she said the cystic hygroma was very large, and she did not feel good about it. She looked at her report and said it was 6 cm big. My husband thought about that for a minute then asked "how big is the baby?" (I was only about 12-14 weeks along at this point) She looked at the report again, and then got up and made a call. There was a misplaced decimal point! It was only .6 cm! Still large, but not larger than the baby! She suggested we do the non-invasive blood test (maternit21). I met with the genetic counselor a few days later and took the test then. I remember it was the day the new Pope was elected, because I was watching the news while I waited for the test to be taken.