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 CHAMPIONS CONFERENCE EDITION
UpSide Weekly No. 29
Thank You Volunteers
Diversity Breakfast Welcomes All
Opening Remarks Highlight Inspiring Stories
Experts, Grand Entry, Siblings & More
Sponsors/Exhibitors Make it Possible
Board Changes Guard at Annual Meeting
Shriver Wins Crocker Award
Dunleavy Delivers Keynote Address
Therese Murray Wins Leadership Award
Donahues Win Leadership Award
Gendron Wins Media Award
Newton Coach Connolly Wins Educator Award
Photographers Capture Special Moments
April 2, 2014 | No. 29
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Thanks to our Sponsor
Thank You Volunteers

 

Thanks to all the volunteers who worked tirelessly to make everything run smoothly for all the participants at our 30th Annual Conference. 

 

Many of you started Friday night and stayed at the DCU Center through dinner to stuff bags and organization registration. And many more were up with the sun on Saturday morning and working into the afternoon supporting our speakers, our luncheon attendees, our self advocate participants and others. 

 

We truly appreciate your commitment to helping us with our mission in this very critical way. 

All Are Welcomed at Diversity Breakfast

 



Once again, we were thrilled to hold our yearly Diversity Breakfast the morning of our Annual Conference. 

Family Support Director Sarah Cullen and Carlos Suarez-Boulangger addressed guests in English and Spanish. They encouraged encouraged veteran families of diverse backgrounds to remain connected and welcomed new families into our community. 

Read more about our efforts to welcome families of all cultures and backgrounds here

Opening Remarks Highlight Caira, Fitzgerald Stories

Executive Director Maureen Gallagher, in her opening remarks, highlighted the stories of two champions in the MDSC community. 

 

In 2010, Liam Fitzgerald, a 4-year-old boy from Northboro with Down syndrome, entered treatment for Leukemia. After 3 years of ongoing treatment, Liam is doing exceptionally well.   

 

Even though they had been through so much, Liam's family was always thinking about how they can help others. This past November, Liam's big brother Nick committed to play in our Bruins Alumni Hockey Game to honor Liam and raise awareness and funds for the MDSC. Liam came to our conference with his mom and dad. 

 

Jordan Caira, a self-advocate and member of the MDSC's AIM program, has sleep apnea - a condition that is common for many people with Down syndrome. She and her family have decided that a new cutting-edge surgical procedure available in Cincinnatti is her best bet for breathing easier at night. 

 

After learning about Jordan's situation, her fellow students at Framingham High School, where Jordan goes to school, showed what being a champion means. 

 

Jordan's friends banded together not only to raise money for her trip, but also to raise awareness about Down syndrome. They designed t-shirts for Jordan - reading "True Friends Don't Count Chromosomes" - and sold more than 100 inside and outside school.

 

They launched their own Facebook page to build awareness and took to the media to spread the word. 

 

We were so happy to have Jordan, her mother and her friends join us at the Annual Conference wearing their signature shirts. Listen to them give their signature chant here

 

Experts, Grand Entry, Siblings & Much More

 

We certainly can't forget to mention the incredible array of local, regional and national experts on the entire range of topics related to Down syndrome who spoke throughout the day to parents, educators and others. Thank you all!

 

We would also be remiss not to mention our incredible Self Advocate Track, headed up by the MDSC's Colleen Endres and Ashley Coates, and our Brother & Sister Track, run once again by Sam Stark (below center).

 

Then there was our Olympic-themed Self-Advocate Grand Entrance choreographed by Colleen and featuring self advocate champions Christopher Sanchez, Katie DeBlasio, Noelle Borchardt, Lina Gutierrez and DJ Russell. 

 

Check out our Facebook page and share with us your favorite moments.   

Sam Stark, center, ran the Sibling Track
Sponsors/Exhibitors Make it All Possible
DDS Commissioner Elin Howe, right, 
with Maureen Gallagher

Our 30th Annual Conference would not have been possible without the support of our generous sponsors: The Massachusetts Department of Developmental Services, the Seven Hills Foundation, Boston Ballet Adaptive Dance Program and the Massachusetts Developmental Disabilities Council

 

  

A special thanks also to our more than 30 conference exhibitors who provided a valuable array of services, programs and products. This includes three Self Advocate run businesses: Chris May Photos, Tucker Collins Photography and Paintings by Michael Avakian

30th Conference Combines Education, Inspiration 

  

The task is daunting, perhaps this year even more than ever -- capturing our annual gathering at the DCU Center in Worcester in a single edition of the UpSide Weekly. 

 

This was our 30th Annual Conference, a milestone in and of itself. As you know, that means the MDSC has been working for three decades to make sure everyone in Massachusetts understands that every person with Down syndrome - in our schools, in our neighborhoods, in our workplaces - is a Champion. That's 30 years of championing quality health care, inclusive education, and community supports for people with Down syndrome. We are equal parts proud of our accomplishments and grateful that you have been behind us, driving us every step of the way. 

 

But on March 22, the day after World Down Syndrome Awareness Day, the spotlight was not on the MDSC, it was on the real champions of our community, our loved ones with Down syndrome. In the dozens of expert sessions, parents, educators and other loved ones learned what they can do individually and societally to allow people with Down syndrome to reach their full potential. And at our Awards Luncheon and elsewhere we celebrated both self advocates and others in our community who have made our mission their mission, to help people with Down syndrome live fulfilling lives in the community. 

 

First, here's our Official Champions Conference Video Slideshow featuring the amazing photos that you submitted (crafted by MDSC communications intern Zhou Li). Thank you!  

You Are the Champions - Official 30th Annual Conference Video
Annual Meeting Welcomes New Board Members
Incoming MDSC Board members Israel Ruiz (center), Jeannette Angles (center left) and Judson DeCew (center right) with Board Chair Steve Narey (left), Past Board Chair Louise Borke (2nd from left)
and Executive Director Maureen Gallagher (right)

In our first meeting of the day, MDSC Executive Director Maureen Gallagher highlighted the many accomplishments of the MDSC this past year by delivering the Annual Report to our membership. She shared updates about MDSC's programs, advocacy efforts, public awareness initiatives, financial status, and strategic direction and thanked MDSC members for their extraordinary support that has made this all possible. See the Annual Meeting Report here. 

 

Immediate Past Chair Louise Borke and new Board Chair Steve Narey conducted the business portion of the Annual Meeting welcoming three new Board members -- Jeannette Angles, Judson DeCew and Israel Ruiz. They also thanked outgoing members -- Shey Jaboin, Ann Bersani and Brian Skotko -- for their exceptional service. 

 

Board Members Completing their Terms (Clockwise from bottom):
Brian Skotko (flanked by Steve Narey & Louise Borke), Shey Jaboin with daughter Tara, 
and Ann Bersani with husband and son Mike and Brendan Durkin.

 

Special Olympics' Shriver Wins Crocker Award

 

 

We were delighted to be able to recognize Tim Shriver with the MDSC's 2014 Allen C. Crocker Award of Excellence, our highest honor, for his worldwide impact creating creating public awareness and advancing acceptance and inclusion for people with disabilities. 

 

Shriver is a social leader, an educator, activist, film producer, and business entrepreneur. As the Chairman of Special Olympics, he serves nearly 4 million athletes and their families in 180 countries. In his 17 years at the helm, Tim has helped transform Special Olympics into a movement that focuses on acceptance, inclusion, and respect for individuals with intellectual disabilities in all corners of the globe, launching the organization's most ambitious growth agenda that has led to the recruitment of over 2 million new athletes around the world. 

 

Although Tim was unable to attend the conference, he pre-recorded an acceptance speech. Read more about Tim and watch his acceptance by clicking photo above. Accepting on his behalf were Special Olympics Massachusetts CEO Mary Beth McMahon and Special Olympian Melissa Reilly (above right).  

John Dunleavy Delivers Heartfelt Keynote

 

Without a doubt, one of the highlights of the day was the Keynote Address by John Dunleavy. We first met John a couple of years ago when he and his mom Toni visited our office and announced he wanted to run the Falmouth Road Race for the MDSC.  We were immediately struck by his poise, positive attitude and enthusiasm.

 

Although he ultimately was unable to run due to medical issues, he instantly become an integral member, soon thereafter joining the MDSC's Self Advocate Advisory Council. Today, John works for Delaware North Companies, the parent company of the Bruins and Celtics and is a well-loved member of the Bruins front office.

 

Just as when he coached the Bruins Alumni team at our Annual Hockey Benefit in November and gave a pre-game pep talk to the current Bruins team earlier this season, John's keynote brought people to their feet and left the crowd inspired and smiling ear-to-ear.   

 

Check out John's Powerpoint Presentation and stay tuned to our YouTube channel for his complete speech. 

Sen. President Murray Wins Leadership Award

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

One of two MDSC Leadership Awards this year went to Senate President Therese Murray, who in her leadership position over the past eight years has been a Champion for creating expanded opportunities for people with Down syndrome and other disabilities. 

 

In a heartwarming presentation, Sen. Murray was given her award by Dave Falcone and his daughter Lucy, who has Down syndrome. Dave served as Sen. Murray's Director of Communications & Operations for six years. 

In 2012, President Murray was instrumental in Massachusetts' passage of the MDSC's landmark Prenatal Bill, known as An Act Relative to Down Syndrome Genetic Test Results, the first state legislation of its kind in the nation, which mandated that new or expectant parents of children with Down syndrome were given culturally-appropriate, accurate, up-to-date information about what it means to have a child with Down syndrome. 


Over the past two years, President Murray has played a key role in providing state funding for essential MDSC programs and services. Without her leadership, the MDSC would not be able to do what we do. 

Under her watch six years ago, the Senate budget included historic language changing the name of DMR to the Department of Developmental Services, beginning the movement in Massachusetts to remove the "R-word" from government language entirely. Arguably most important of all, she has helped deliver the best possible budget for people with disabilities year after year despite a difficult economic climate. President Murray will truly be missed at the State House when she leaves office later this year. 
 

Richard & Nancy Donahue Win Leadership Award

 

The second of the MDSC's two leadership awards this year went to Richard and Nancy Donahue. 

Their public service (dating back at least to when Richard was an assistant to President John F. Kennedy) is unmatched in the region. 
But what is often overlooked about Richard and Nancy's contributions are the remarkable choices they made for their family, specifically around their their son Philip who was born in 1968 as the 10th of their 11 children. Philip had Down syndrome, which meant, in those days, that he would grow up in an institution, no questions asked.
Phil Donahue and his brother Daniel chat with
Mary Beth McMahon of Special Olympics

 

But despite the recommendations of doctors and other so-called experts, Richard and Nancy held to the belief that "there's no one who can take better care of our child than we can" and they raised their son at home with all of their other children. 

Not only did the Donahues brazenly trailblaze a path by keeping Phil at home, they went on to nurture his abilities and give him every opportunity possible in life. After attending public schools in Lowell, Phil went on to study at Greater Lowell Technical High School. At 22, he graduated with a major in maintenance engineering in 1991. Since then, Philip has held a variety of jobs in his community, including at a real-estate office, a fitness center and a restaurant. For the past 14 years, he has worked at Market Basket in Tewskbury as a bagger and Customer Service Representative working five hours a day, five days a week. In 2010, Philip delivered the keynote speech at this very conference on this very stage and now serves on the MDSC Self-Advocate Advisory Council

The same commitment that Richard and Nancy have shown to Philip, the Donahues have shown to others with Down syndrome. For the past four years, they have served on the MDSC's honorary board, and through their support of the MDSC and our mission, they have helped our organization continue to grow and become what it is today. 

Nancy and Richard were in Florida and unable to attend in person but it was special to have their son Philip on stage to accept on their behalf and two other children, Daniel and Alicia in attendance.
Photographer/Father Gendron Wins Media Award

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We were overjoyed this year to present our Media Award to a very close friend of the MDSC. Over the years, photographer Kyle Gendron has been an unsung hero of the our success in reaching a broad audience with our message of inclusion, empowerment and acceptance for people with Down syndrome. 

 

He has done this in his typical humble fashion, by quietly volunteering his time to photograph events for the MDSC and our partner organizations. Kyle will tell your he's "just an amateur" photographer, but his final product proves otherwise - he is a true professional. You can see in his photos of people with Down syndrome and their families that Kyle has internalized the mission of the MDSC. He photographs our families with a loving eye.

 

Year after year, Kyle has shot practically every kind of event for the MDSC - our annual Hockey Benefit, Educators Forum and New Family Socials. He has photographed our Buddy Walk for each of the past 7 years, including two of our Buddy Walks last year, and our Annual Conference for the last 5 years. 

 

Even after Kyle was diagnosed with cancer almost two years ago now, he has continued to show up at all MDSC events to chronicle our work through his beautiful photography that gets at the heart of who people with Down syndrome are as individuals and who we are as a community. 

 

Kyle brought everyone to their feet (and to tears) when he brought his 9-year-old daughter, Mary Elizabeth, to the stage. "My inspiration," he called her.  Kyle is a true champion and there is more deserving or our 2014 Media Award. 

 

Media Award winner Kyle Gendron flanked by
Board Chair Steve Narey and Vice Chair Jann Sheehy
Newton Coach Connolly Wins Educator Award
Coach Connolly accepting the Educator Award. In the background is Brendan Durkin,
the team manager who presented the award to Coach.

In 2012, a young man named Brendan Durkin, a member of our Advocates in Motion program, delivered the keynote speech at our Northeast Down Syndrome Education Conference. In the audience that day was Paul Connolly, the Newton North High School varsity basketball coach. 

 

To Brendan's parents, it was no surprise that Coach Connolly would make a point of being there - he had been there for Brendan from the moment they were in introduced in 2008 when Brendan first visited the school. It was then that Brendan told Coach Connolly that he was interested in basketball, and coach's response was, "However you want to be involved, Brendan, we will make it happen." And they did.

 

Coach Connolly encouraged his team to value Brendan's role, giving him opportunities to deliver the pre-game pep talk and stand center court for the announcement of the starting players. 

 

Even though Brendan earned his Certificate of Attainment, team players didn't want Brendan to "move on." Again, with Coach Connolly acting as lead facilitator, Brendan continued to gain confidence and skills, saying goodbye to a one-on-one aide and instead allowing the team to be Brendan's natural support. Brendan began riding the bus to away games with the team, independently arranging his rides to practice with his teammates, and not only attending team dinners but even hosting one.

 

Then, on Saturday, Jan. 25, Brendan, Coach Connolly and the entire team took their game to the next level when Newton North, as one of 14 of the area's top Division 1 boys programs, was asked to play in the Boston Celtics' Good Sports Invitational at the TD Garden. Read the full story by clicking here...

 

Brendan's mom summed it up this way. "Under Coach Connelly's tutelage, Brendan has grown from a shy, unsure freshman, with basketball players towering above him, to the confident manager of the team, whom Coach Connolly treats like the other guys and expects Brendan to do his best everyday on the court. 'Durkin, get moving,' he says."

 

Congratulations to Coach Connolly!

Photographers Volunteer Time, Talents to Capture Special Moments
Photographer Melissa Coe shoots Toni and John Dunleavy during luncheon rehearsal while getting her daughter Lily to sleep.
 
You may have noticed all the amazing photos from our Champions Conference that have graced our Facebook page and communications like this UpSide. That's because we had an awesome crew of photographers who volunteered their time on March 22. We appreciate them lending their valuable time and talents to help us promote and remember this important event. They captured both the spirit of the event and so many special moments. Thanks to Melissa Coe, Kate HunterNora Kenny, Mary Ellen McDonough, Chris May, Kyle Gendron, and Melanie Perkins McLaughlin. You can check all their photos from the conference here.  
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