***** UpSide Weekly No. 40*****

Guild for Human Services Launches New Website

The Guild, a proud sponsor of MDSC's Annual Conference and Annual Buddy Walk and Harvest Fair, provides day school services for students and residential services for students and adults with intellectual disabilities, behavioral challenges and/or mental health diagnoses.

The Guild, based in Waltham, MA, has long-served students with complex special needs including individuals with Down syndrome and individuals with Down syndrome and Autism.

The Guild's smart and simple-to-navigate new website, guildhumanservices.org, provides readers more detailed information about those served as well as a clear snapshot of available services.

As The Guild values its interactions with MDSC families, it is pleased to launch its new website that will allow MDSC members to more easily learn about and connect with The Guild.

Bake Sale, Car Wash Fundraisers Huge Success

Congratulations and thank you to Jessie Lewis of Needham for organizing a community fundraiser car wash recently (photo above) that raised over $1,200 to support MDSC Programs and Services!

Over last weekend, Team Dominic's Angels raised $1,250 at a bake sale fundraiser at a local Stop & Shop on the Cape! We have reason to believe that the success had as much to do with Dominic's presence as it did with the yummy baked goods.

Thanks to Dominic's mom and dad, Jessica and Brian Caprio, for organizing and all their friends and family for helping out.

If you are interested in learning more about MDSC community fundraisers or want to host your own, visit here.

MDSC Parents First Call Program Busy as Usual

Grand Rounds

Sarah Cullen this week participated in presenting Grand Rounds for the Pediatric Department of Boston Medical Center. Sarah joined Mary Ellen McDonough, Dr. Yuen Lie Tjoeng, Terry Iandorio, Dr. Brian Skotko, Dr. Bob Vinci and Dr. Katie Cecala. The team gave medical staff an up close and personal view on Down syndrome and talked about DNA prenatal testing and how best to deliver a prenatal diagnosis of Down syndrome to new families.

Special thanks to Terry Iandiorio (pictured below), a prenatal First Call dad who shared his story of receiving a prenatal diagnosis and how invaluable the MDSC Parents First Call program was to them - specifically meeting Melanie McLaughlin and their daughter Gracie and family (Terry's wife Ann helps to host our New Family Socials at MDSC).

NEW FAMILY SOCIAL

It was another warm, wonderful New Family Social last Saturday, where dozens of new family members gathered at the MDSC office in Burlington to meet, network and share stories.

The group even helped us announce the MDSC getting the Cummings Foundation's 100Kfor100 grant, which will, in part help bolster programming for new families.

Go here to learn more about our regular New Family Socials. Save the date for our next one on August 8. RSVP to Sarah Cullen at scullen@mdsc.org

Research Studies

Project Play - Northeastern U.

Project Play seeks to evaluate all children's play as a developmental process across the age span of 3 1/2 to 5 years, and infants and toddlers 8 to 36 months with identified delays.

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.

Click here for a flyer with more information or contact the Project Play team at (617) 373-3297 or projectplay@neu.edu.

MassGeneral Hospital Neurocognitive Study

The MassGeneral Hospital Down Syndrome Program has been conducting clinical trials for people with Down syndrome ages 12-30. The company sponsoring the study, Hoffman-LaRoche, is now interested in including children with Down syndrome ages 6-11. For this particular project, no study drug will be offered to the children. Instead, they are only looking to see how they perform on a range of neurocognitive tests so that the best tests are used in future trials that do involve the study drug.

Caregivers have the option of receiving a summary of neurocognitive assessments at the end of the study. The child and caregiver will both receive $375 upon full completion of 4 visits. All travel expenses, including airfare and hotel, are covered. For more information or if interested, visit link below.

Tongue Pacemaker System Study

Does your son or daughter with Down syndrome have trouble wearing a CPAP mask or have a tracheotomy for the treatment of moderate or severe obstructive sleep apnea?

Drs. Hartnick, Diercks, Keamy, Kinane, Schwartz, and Skotko at Massachusetts General Hospital and Massachusetts Eye and Ear Infirmary are doing a research study to see if placing a surgically implanted nerve stimulator, similar to a pacemaker, is safe and effective in relieving airway obstruction during sleep in children with Down syndrome, ages 12-21.

This device has already been tested and approved for use in adults with moderate to severe obstructive sleep apnea. If you are interested in learning more about this research study, and whether or not you/your child would be an appropriate candidate, please contact the research team by calling Dr. Hartnick at (617) 573-4206 or by email

Please note: The MDSC is dedicated to ensuring that all members have information about and access to the latest research opportunities; we review each research proposal for content, ethics, and feasibility before forwarding information to you. At no time does the MDSC sell or share your MDSC member contact information with researchers. The MDSC will not be informed by the researchers about who agrees to participate in this research. Your agreement to participate or not to participate will in no way impact any services, support, or resources that you receive from the MDSC. To read about this and other Research Opportunities, go here.

D.A.D.S. Group Tees It Up

Dads Appreciating Down Syndrome (D.A.D.S.), an MDSC affiliate, is holding its 6th annual golf outing on Monday, July 6, at Easton Country Club, in Easton, Ma. This event is our premier fundraiser for the year. All funds generated benefit families of children with Down syndrome in Massachusetts. We are in huge need for raffle items, golfers, volunteers, and sponsors.

See here for details and registration.

MDSC's First Conference for Adult Self Advocates Oct. 24

The MDSC is thrilled to announce our very first adult conference in collaboration with the Massachusetts General Hospital Down Syndrome Program on October 24th.

The day will focus on empowering adults with Down syndrome ages 22 and up along with their families and support network to plan for a healthy and meaningful future.

Stay tuned for registration which will open this summer!

SAVE THE DATE: Eleventh Educators Forum on Nov. 18

How to Work Effectively With Your IEP Team:

An MDSC Education Webinar

At our 11th Annual Educator's Forum on November 18, we will once again bring together some of the country's foremost experts on a range of topics related to best practices for educating students with Down syndrome and other intellectual disabilities. Save the Date and look for updates on our Facebook page and other communications.

2nd Annual Advocacy Day

Down Syndrome Advocates Descend on State House

The MDSC's 2nd Annual Down Syndrome Advocacy Day last week was an unbridled success as hundreds of self advocates and legislators gathered before the Grand Staircase of the State House to learn about and push for funding and policy priorities that allow people with Down syndrome to reach their fullest potential.

MDSC Executive Director Maureen Gallagher and MDSC Board Chair Steve Narey made a compelling case for our two new priority bills and funding for the MDSC line item and DDS line items to prepare folks for their meetings with legislators. These critical asks of the Mass. Legislature will provide access to organ transplants, more opportunities for higher education, and funding for MDSC's and DDS's many programs and initiatives.

Ned Reichenbach, MDSC Allen Crocker Self Advocate Intern

Emceed with grace and force by Fox25 anchor Heather Hegedus, the program highlighted the power of people with Down syndrome on Beacon Hill and beyond. Sen. Jamie Eldridge's staffer Melissa Reilly, Speaker Robert DeLeo's staffer Brian Heffernan and MDSC Allen Crocker Self Advocate Intern Ned Reichenbach all delivered powerful speeches, as did Boston School Committee member Regina Robinson, whose son has Down syndrome.

The MDSC's House of Representatives Legislative Champion of the Year award was presented to House Ways & Means Chairman Brian Dempsey, who was introduced by John Anton, the MDSC's Legislative Advocacy Specialist and a constituent of Chairman Dempsey. The Senate Champion of the Year Award was presented to former Senator Richard Moore, who was introduced by Senate President Stanley Rosenberg. Both winners were presented with original works of art by painter Michael Avakian, who happens to have Down syndrome.

Also providing insight and inspiration into the legislative process and advocacy efforts were DDS Commissioner Elin Howe, MDSC Government Affairs Consultant Jane Lane and disability champion Rep. Tom Sannicandro, whose son David has Down syndrome.

After the formal ceremonies, advocates fanned out throughout the building to meet with their legislators to tell their personal stories and lobby for Down syndrome priorities.

As Executive Director Maureen Gallagher said: "Without your active participation and advocacy, the MDSC would never have been as successful as we have been. With your help, the MDSC has become a strong voice for individuals with Down syndrome and their families."

Special thanks to photographers John Crookes and Melanie Perkins McLaughlin for capturing our event on film. Check out their photos on our Facebook page. See more videos from the event on our YouTube page.

IT'S NOT TOO LATE TO ADD YOUR VOICE TO OUR ADVOCACY EFFORTS

You can help the MDSC advocate for critical policies and legislation by following the easy steps on our Virtual Advocacy Day communication here. Note: for families from Central MA there is an updated ask to support the UMASS line item for the new Down syndrome clinic.

Buddy Walk Program

Buddy Walk Season Sets Sail in Falmouth on July 26

Start Your Team Today

Get the Buddy Walk season started right at our 5th Annual Buddy Walk by the Sea in Falmouth. Finish it off at 19th Annual Buddy Walk & Family Festival in Wakefield. And don't forget our Central Mass. walk in between. At each event, you're guaranteed a fun, feel-good, family-friendly day while making a difference in the lives of people with Down syndrome.

Buddy Walk by the Sea in Falmouth (July 26) - REGISTER

The Buddy Walk by the Sea will feature:

Live entertainment by The Atlantic Ave Band

Nautical Games & Activities provided by local Girl Scouts and Cape Cod Children's Museum

Facepainting

Auction & Raffle including photo package from Kat Newland Photography

Exhibits by MDSC First Call, MDSC Grandparents, Heartbeats for Down Syndrome

More to come!

Registration includes walk festivities, event t-shirt, and light refreshments. Please note: t-shirts are only guaranteed to people who pre-register.

- Buddy Walk by the Sea
Schedule of Events -

10:00am-11:00am - Registration and pre-walk festivities

11:00am-12:30pm - 1.2-mile walk and post-walk activities

Running for Down Syndrome

Join Team MDSC for Historic Falmouth Road Race

Apply now to run the 43rd New Balance Falmouth Road Race on August 16. You'll become a part of this historic race while supporting people with Down syndrome. Only 9 spots remain!

Now is your chance to run this amazing 7-mile course along the pristine Cape Cod coastline. Join the cause for a fun day on the Cape that will make a difference in the lives of people with Down syndrome and their families.

For more information email MDSC Executive Assistant Jacquie Sherman at race@mdsc.org. Please note that as a participant in the Numbers for Non-Profits program, all MDSC runners are required to raise $1,000 by race day.

As a registered team member, you are guaranteed an official number in the race, a special MDSC running singlet, an invitation to join us at our pre-race luncheon on the weekend of the race in Falmouth and much more. We also send you some quick and effective tips to raise awareness and funds. Help us make all the work we do at the MDSC possible!

Annual Golf Tournament Hosted by Business Advisory Council

Nasty Weather Doesn't Dampen 8th Annual Golf-a-thon

On June 1, the award-winning course at the Turner Hill Golf Club in Ipswich once again played host to the Massachusetts Down Syndrome Congress's 8th Annual Corporate Golf Tournament, sponsored by ITG Canada.

60 golfers, who had travelled from near and far to have fun while also helping people with Down syndrome, were greeted with some untimely New England weather - wind swept rain and unseasonably cold temperatures that continued throughout the day.

The event was organized by the MDSC's Business Advisory Council, chaired by Paul Karrlsson-Willis of Ipswich, president of Marco Polo Securities. With the MDSC preparing to launch a public awareness campaign about the power of people with Down syndrome in the workforce, the BAC chose to focus its event on the need for better employment opportunities for people with Down syndrome.

Warm inside after the golfing, participants enjoyed the comforts of the exclusive Country Club at Turner Hill, including dinner, live and silent auctions, and a program of inspiring and enlightening speakers who brought the theme of employment to life. Speakers included MDSC Allen Crocker Intern Ned Reichenbach, and John Dunleavy, a member of the MDSC Self Advocate Advisory Council and the Bruins front office. Ipswich state representative Bradley Hill also made an appearance and spoke.

Our golfers, including celebrity players Reilly Smith (current Bruins right winger), Bob Sweeney and Bruce Shoebottom (former Bruins), and Tyler Lagasse (Special Olympics hall-of-famer), were not deterred by the weather - despite being soaked to the bone afterwards.

In fact, even after the bramble-style tournament had wrapped up, our celebrity golfers and a couple of brave challenges took to the course again for a Celebrity Golf challenge that promised a shot at a 60-foot put for $2,500 and a 165-yard drive worth $1 million for a hole in one. ITG's Canada's James Duncan got that final opportunity and made a legitimate bid for the pin but came up about 15 feet short.

Donations can still be made at www.mdsc.kintera.org/golfathon2015. Thank you to everyone who participated and made the day such a resounding success.

Advocates in Motion

AIM Wraps Up Year & Heads Right Into Next Year

End-of-Year Party

Join our Advocates in Motion at our end-of-year celebration Sunday, June 28th at the Franklin Park Zoo! AIM members will get together to celebrate another amazing AIM year with a delicious boxed lunch followed by an opportunity for families to explore the zoo on their own or with a friend. RSVP by June 17, 2015. See here for full details.

Buddy Walk Team

Join the Advocates in Motion's "AIM High for the Sky" Buddy Walk team, which will participate in our Buddy Walk & Family Festival on Oct. 11 in Wakefield. Any family with a child between 13-22 - whether you have been involved in AIM yet or not - can join the AIM High for the Sky. Go here to join.

Theme for Next Year

Also, stay tuned for details about next year's AIM theme. The 2015-16 curriculum will be planned over the summer. Families can expect to hear from us in late August/early September.

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! For more information, contact us at aim@mdsc.org.

Grants Bolster MDSC's Ability to Provide Essential Services for Individuals & Families

Cummings Foundation

The MDSC is thrilled to announce that we were selected as a Cummings Foundation grant recipient! The funds will assist the MDSC in providing a wide range of family support center activities. MDSC Executive Director Maureen Gallagher attended a ceremony, hosted by the Cummings Foundation, for the 100 recipients of the $100,000 grant. (She is pictured above with foundation co-founder Bill Cummings). "The more I learn about the Cummings Foundation and their work, the more impressed I am by Bill and Joyce's commitment to organizations like the MDSC and their foundation's founding principles," Maureen said. "Having met Bill in person, I can't say enough about this man's and his foundation's determination to help make it a better world."

The grant will assist the MDSC in providing family support center activities that provide education, resources and supports for individuals with Down syndrome and their families. Thank you Cummings Foundation!

Foundation for MetroWest

The Foundation for MetroWest recently awarded our AIM: Teen and Young Adult Program with a grant for $3,000! We were thrilled to attend a grant ceremony and meet the wonderful students who participated in the Youth in Philanthropy program who selected us for this honor. Charlie Gadbois, former MDSC Board Chair, (pictured with his daughter Marie in left of above group photo, and MDSC Teen and Adult Services Director Colleen Endres on far right) said that the recognition of the MDSC affirms the belief that the world continues to open doors for individuals with Down syndrome so that they can and will lead full and meaningful lives!

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