A Life of Glee

by Jim Denver from NBC King 5:
BELLEVUE, Wash. - Lauren Potter is living a Glee-ful life.
The 24-year-old actress plays the role of Becky Jackson, a sassy cheerleader with Down Syndrome, on the long-running hit show that takes high school drama and puts it to music.
Potter said, "I wanted to be a cheerleader since high school but, sadly, I didn't make the team."
​​Cheer squad ambitions are one of the only things that the upbeat actress and her edgy character have in common.
"Well, to tell you the truth," Potter said, "Becky's a 'bee-otch.' Lauren is not."
But Becky and Lauren are both breaking new ground.
"Down Syndrome is kind of hard sometimes," said Potter.
As a child, Potter was mistreated at times by other kids. It's an experience she carries with her and uses as a force for good, speaking out with the help of friends like co-star Jane Lynch, who appears with Potter in an anti-bullying public service announcement.
"We have to end bullying once and for all," Potter said. "Enough is enough."
Potter travels the world, sharing that message, and her story of reaching for the stars. She recently made a stop in Bellevue to speak at an event organized by Parent Map. The admiration between the star and her fans is mutual.
Potter said, "They're beautiful, they're unique, they're whatever they are. They can live their dreams whatever those dreams are."

Multi-talented musician sets Sunday performance

from The Buffalo News:
Sujeet Desai, an accomplished 33-year-old musician who was born with Down syndrome, will be featured in a concert, “Hand in Hand with Yad B’Yad: A Musical Performance by Sujeet,” at 2 p.m. Sunday in the Maxine & Robert Seller Theatre in the Jewish Community Center, 2640 N. Forest Road, Getzville.
Desai, who recently moved to Williamsville, travels worldwide giving concerts and leading self-advocacy workshops. He has performed in 13 countries and 40 states and has received numerous national and international awards. He has been featured in two documentary films.
A graduate of the Berkshire Hills Music Academy in Massachusetts, he plays seven instruments – the B-flat and bass clarinet, saxophone, violin, trumpet, piano and drums.
Also a champion athlete, he won gold and silver medals in swimming in the World Games 1999 Special Olympics and numerous medals in alpine skiing, cross-country running and bowling.
Suggested donation is $18 at the door. Students will be admitted free. A light kosher reception will follow.

Portrait of a community hero

from Simco.com:

When Lisa Maloney read the criteria for the Canadian Down Syndrome Heroes award, she knew someone who fit the bill exactly: Kevin York.

“Kevin meets all of the requirements to be a hero in our community,” said Maloney, the volunteer co-ordinator with Community Living Huronia (CLH). “He certainly is a great role model for members of our community, his peers, and family members that have a child or siblings that have Down syndrome.”

The genetic disorder is caused by the presence of a third copy of chromosome 21. It is typically associated with physical growth delays and some intellectually disability.

Maloney said York “is the perfect example that people with exceptionalities have skills and abilities to give to the community.”

The long list of organizations and activities for which the Midland resident volunteers includes CLH’s charity golf tournament, the Salvation Army kettle drive, the Rotary Club’s Party on the Dock, and many others.

Maloney said York is particularly effective pounding the pavement to collect prizes and sponsorships for the golf tournament.

Cathy York said she can’t remember exactly when her son started volunteering, likely with CLH, but it has since become a key part of his life.

“I have said to him it’s good to do things for others, because a lot of people do things for him, but he just ran with it. Kevin loves it. He likes to meet people and he loves the social part of volunteering.”

Previously, York never went anywhere without his mom, but now he goes to the mall, the movies and Tim Hortons on his own. After discussing options with his mom, he later finds his own way home from his many activities.

“His friendship list is miles long,” Cathy York said. “I don’t worry. Everyone knows him and he has a friend on every corner.”

Indeed, in the nomination package for the award, Doug Andrews wrote: “Walking down main street in Midland, you think you are with the ‘King of Kensington.’ (Kevin) is respected and known by community members from all walks of life.”

Cathy York said she was surprised to learn of the nomination, and while she is frequently told how much her son is appreciated, it was wonderful to read all the nice things people had to say about him.

Winners will be announced later this week in time for World Down Syndrome Day on March 21.

Support and Help Promote the ABLE Act Petition through NDSS Board Member Sara Wolff

As many of you know, the ABLE Act momentum continues to build - we now have 326 cosponsors in the House and 62 cosponsors in the Senate. Thank you again for all your support - we are going to get this bill passed this year!

Our NDSS Board Member and self-advocate, Sara Wolff, launched her own change.org petition to call on Congress to pass the ABLE Act this year. Please visit the following link and sign Sara's petition:   

http://www.change.org/petitions/u-s-house-of-representatives-pass-the-able-act

Please also take a few moments and share the petition with your colleagues and friends on Facebook and Twitter.

Here's a sample tweet: "Help @NDSS & (INSERT YOUR ORG) get Congress to #PasstheABLEAct Sign the @Change petition by @NDSS board Member Sara Wolff http://chn.ge/1c1OSpY"

Thank you again!

Ginny Sessions
Manager, Grassroots and Development Programming
National Down Syndrome Society

Click the link below to log in and make your call:
https://www.votervoice.net/NDSS/campaigns/32848/respond

Man’s Joy for Life is a True Gift to Others

by Nicole Phillips from Kindness is Contagious:

I have a special friend who comes to nearly every Bison basketball game. I can always count on him to be waiting near the locker room to greet the players, but he’ll leave his post when he sees me, and that’s always my favorite part of the night. He wraps his arms around me in a hug that allows me to feel his love all the way down to my toes.

His name is Michael, and he is a 31-year-old living with Down syndrome. He lives with his parents, who adore the Bison almost as much as Michael. Almost, but not quite.

Michael got the chance to go on a summer vacation this year to visit his sister, Amy, who lives in New York City. His mom emailed me so I could hear all about the big trip.

“Michael was so excited to see his sister, and she had some surprises planned for him and us. The last day we were able to spend the morning in the studio of ‘Good Morning America,’ watching the show.

Hahnville grad with Down syndrome becomes advocate for those with disabilities

 by Kyle Barnett from the St. Charles Herald Guide:
Craig Blackburn has a motto by which he lives.
“Never give up. That’s my message. Never give up,” he said. “If you have fears don’t look back, look ahead.”
That is a message the 34-year-old Hahnville High School graduate has been carrying through his entire life, and Blackburn has had to overcome a lot. He was born with Down syndrome as well as a heart defect that had to be repaired through open heart surgery when he was an infant.
Now, Blackburn has been able to accomplish so much that he has become an advocate for others with disabilities.
He is on the board of the Down Syndrome Association of Greater New Orleans and regularly travels the region and country giving speeches to educators and those within the disabled community. In recent years, he spoke to a crowd of 1,300 at Tulane University and also traveled to Qatar to give a speech.
“It’s about educators and families and their child’s future to tell them they can do it and not to give up on their dreams. When I do my presentation it is like making them believe what they can do and don’t look back,” he said.

Karrie Brown hopes to dance with Ellen Degeneres

from KSDK News Channel 5:
Karrie Brown's first day of school outfit went viral, resulting in not only thousands of fans but a photo shoot for a national clothing store.
The Collinsville High School Junior has Down syndrome and autism. A self-proclaimed fashion lover and aspiring model, Karrie's favorite store is Wet Seal. Her mother, Sue Brown, posted a picture of Karrie in her brand new threads on the first day of school August 12th and was flooded with responses about how great Karrie looked.

Soon enough, a family friend launched a Facebook Fan page displaying all of Karrie's daily school outfits.
Thousands of people liked the page and within a couple days Wet Seal was calling.
The retailer is flying Karrie out to California next week for a photo shoot.
Karrie is a teen who is constantly giving back to her community. She volunteers at her local YMCA and library branch. She also takes Zumba classes and Hip Hop classes because dancing is her favorite thing to do. Her love of dance has given birth to her ultimate dream -- dancing with Ellen Degeneres -- which has yet to be realized.

Let’s End the R-Word Once and For All

by John Franklin Stephens from Parenting:

John Franklin Stephens, Special Olympics Virginia athlete and global messenger, first spoke out in a 2008 essay called “Using the Word 'Retard' to Describe Me Hurts.” Last October, he wrote an open letter to conservative commentator Ann Coulter, calling her out for her use of the R word as a slur in a tweet. The letter has been viewed more than 3 million times. Frank, as he’s known to friends, has gone on to speak about discrimination all over the country. In honor of Spread the Word to End the Word’s annual day of awareness, we asked Frank to reflect on the Ann Coulter aftermath, the reason he now thanks her, and why he’s so much more than just a label. Frank will also be a guest on HuffPo Live on March 6 at 6pm EST.

It has been a little more than four months since I wrote an open letter to a political commentator asking her to reconsider the use of the term “retard” as a synonym for “loser.” I have received no indication that I have had any luck changing her mind.

I am pleased to say, however, that a lot of people have been exposed to our little debate. The overwhelming majority of comments have been responsive to my argument that the term is one of those unthinking slurs that we could best do without. We should think before we casually perpetuate ugly stereotypes.

People still ask me about what is so wrong with using the R-word. I can only say what it means to people like me when we hear it. It means that the rest of you are excluding us from the group we want to be part of. That’s the hardest thing--the loneliness. We process information slower than you do, so even keeping up in a normal conversation is a constant battle for us. We are aware when you stop and just look at us while we are trying to catch up. We are aware when you just say “uh-huh,” and then move on, talking to each other.

You mean no harm, but you have no idea how alone we can feel, even when we are with you.

During one of the television appearances immediately after my letter went viral, I joked that I wanted to “thank [Ms. Coulter] for introducing me to 3.2 million new friends on the internet.”

I confess: I really have loved all the attention. I loved being on television. I am proud that my story will be included in a book about young people who advocate for themselves and that something else I wrote is being published as part of a writing curriculum for middle-school students. I love being asked to speak to students about how hurtful bullying can be.

But none of this is how I dream of my life. Because I am so much more than that one word.

What I would really love to be known as is just another actor/screenwriter hoping to be discovered. You see, I have a role in a movie due out this spring called The Senior Prank, and I have written a screenplay for a short film called Common Dreams that I hope to get produced this year.

That’s how I see myself and what I am most proud of. That’s my dream: that one day you will look at me and see the person (and maybe the actor/screenwriter?) first, and not the disability. When that happens, we won’t any of us worry so much about labels.

Models wanted for Peterborough Down syndrome exhibition

from Peterborough Telegraph by Jim Baker:
Terry Harris is father to Lucy who has Down’s Syndrome. He believes fervently that people with Down’s Syndrome enrich and enhance our society and our lives.

Terry said: “Lucy having Down’s Syndrome never really fazed us. We often think we are extremely lucky as she does not have any of the major problems often associated with Down’s Syndrome.
“That said, she does have her problems and they are sometimes difficult and upsetting. But on the whole Lucy has grown into a lovable bundle that we think completes our family. There’s no doubting Lucy has obstacles ahead but we as a family are supportive of each other.
“The BIG picture is our way of sharing our experiences and letting every family, around the world touched by Down’s syndrome, share theirs.”
The DS The BIG Picture exhibition aims to help everyone from new parents, to people who just want a better understanding of the condition, an understanding built on fact and not misconceptions. Another key component of the campaign is to educate society on the whole and correct dated and negative stereotypes of people with DS.
In support of the exhibition Terry is offering free family photo-sessions, open to people/children with Down’s Syndrome and their families. The sessions are on a first come first serve basis offering time slots of around 35 minutes at Studio One, Ailsworth.
The photographs will be used in The Big Picture exhibition and attendees will also receive a free CD of the pictures taken or can have them printed by the studio at a discounted price.
They will also receive a 25 per cent discount on any future family portrait sessions at the studio.
The photo shoots will take place throughout June/July this weekend. Siblings are welcome but model release forms will need to be signed for the images to be in the BIG Picture exhibition.
The exhibition will coincide with World Down’s Syndrome Awareness Day 2013 (March 21) and will run from March 16, 2013 to May 25, 2013 in Peterborough, at a city centre venue (to be confirmed).
Peterborough United Chairman Darragh Macanthony has also donated £2,000 to the exhibition and offered to support it in any way he can.
DS The Big Picture has also secured the support of the largest charity involved with Down’s syndrome, The Down’s Syndrome Association.
They currently have over 7,000 members across 140 plus affiliates in the UK alone. They also have an exceptionally large presence around the world due to their World Down’s Syndrome International organisation.
A truly unique feature of the campaign is the larger images which aren’t just one picture, but made up from as many as 10,000 individual images which in turn will have a huge amount of information embedded in them from simple comments about Down’s syndrome to links for further reading and information.
If you would be interested in taking part in the exhibition contact Terry as soon as possible on 07747 606996, or at terry@dsthebigpicture.com.

teen with Down Syndrome graduates with standard diploma

from 12 WSFA.com by Beth Shelburne:

Allison Gabriel is a young woman who has dreamed big since she was little. This girl with a big smile is a lot of things--daughter, sister, friend to many.

Allison's strengths have always been the focus in the Gabriel house, because even though Allison has Down syndrome, her parents say it's no big deal.

"Not everyone in this world is perfect. In fact I don't know anyone who's perfect other than Jesus and so... She is who she is," Allison's mom, Susan, said.

 Allison had to work extra hard to pass her exit exams to achieve her goal of graduating with a standard diploma. But despite that achievement, when you talk to Allison, it's never about her.

When asked how she feels about graduation, she said, "It feels great... And I like to be with my sister."

"She does have a heart like Jesus," her mom says. "I mean if you do something to offend her and she gets her feelings hurt often, if you say I'm sorry it's over with."

This compassionate young woman rises to the occasion, because her parents, Susan and Harry, expect her to.

Whether it's a beauty walk or playing basketball at Northridge High School, anything Allison has wanted to do, they've encouraged her and asked others to give her a chance.

Susan says Allison's success is in part thanks to her community.

When Allison was just six weeks old, she started early intervention at the University of Alabama Rise school.

"I think living in Tuscaloosa really, you are kind of at an advantage because when Allison was born Gene Stallings was here so his son was here and it was just people accepted things better," Susan said.

Allison's classmates love her, and what a gift she's given them: a lifetime of open hearts thanks to their time together over the years.

"She knows no boundaries and knows no limits," her dad Harry said.

And she got there with grace and the strength of her family's unconditional love. A big congratulations to Allison. The skies the limit.

see the video here

Dreams come true for a special couple

from Mississauga.com by Alex Consiglio:
Michael Arruda put on his best suit three years ago on Christmas Eve, got a ride over to his lifelong friend's home and had her roused from a sound sleep at 12:01 a.m.
Melissa Mancini came down her winding staircase in her robe to find Michael down on one knee with a dozen red roses and a wedding ring.
"What are you doing here?" she asked. Then, suddenly, she realized her dreams were coming true.
Michael and Melissa were married today at St. Catherine of Siena Church in front of more than 400 people.
They are a unique couple. They both have Down Syndrome.
The couple, who have known each other since they were 2-years-old, left the church in a horse and carriage. They rode back to Melissa's father's home behind the Trillium Health Centre.
"Wooooooo, we're married," yelled Melissa, 25. "We did it!"
Melissa said the horse carriage ride back — despite the "stinky" smell — was "amazing and beautiful." It was just what she always dreamed of since deciding more than a decade ago that she would marry Michael.
They've been dating for seven years, but Ellie De Sousa, Michael's mother, said the two have been taking about getting married since they were just 12.
"Michael was always chasing Melissa around," said De Sousa. "Melissa wouldn't give him the time of day until she began to be interested in men, and then it was settled."
De Sousa said Melissa and Michael first met when she founded Peel's Caring Network for Challenged Children with Anna Mancini, Melissa's mother.
The two have been inseparable since.
Moving forward, the newlyweds will alternate living in the Mancini and De Sousa homes, month by month.
"I wasn't nervous at all," said Michael. In fact, his mother was probably more nervous than either him or Melissa.
"I'm married!" yelled Michael, a big smile on his face as he held Melissa's hand.
For their honeymoon, the newlyweds will first head to Niagara Falls before flying to the Dominican Republic, where Melissa's sister will be joining them.
"She won't be sleeping in my room anymore," said Melissa, pointing out to her mother Anna that she's now a married woman.
"It's a real fairy tale story," said Anna.

Click here for wedding photos!

dancer with Down syndrome wins gold at regional competition

from the Oakland Press by Monica Drake:

Many people with Down syndrome are described as having a lack of coordination — but Royal Oak resident Ryan Dupuis, 24, proves that wrong.

Dupuis has been dancing for the past 18 years, and while attending Royal Oak High School, he was on the varsity cheerleading team.

He is the only student at Juliana’s Academy of Dance in Madison Heights with a disability. Yet, he was selected by the owner to be a co-instructor for a boys hip-hop class.

Last week, Dupuis competed at the senior division of Star Systems National Talent’s regional competition in Sterling Heights, against more than 70 adults, where he won a gold trophy for his solo dance of “Party Rock” by LMFAO. He is now qualified to compete in the national competition in Las Vegas at the end of June, and it was the first year Dupuis performed in a competition.

Juliana Pirpinelli, owner of Juliana’s Academy of Dance, said, “The audience went crazy over him.”

“It’s hard to get up in front of an audience. I used to throw up before I would perform. But he walks up on that stage like it’s nothing,” she said.

Dupuis’ mother Colleen said all the instructors and students at the dance studio “see him for his abilities, not his disabilities.”

“The young people here treat him like everybody else. There’s no difference, and he dances just like they do,” she said. Dupuis has been a student at Juliana’s Academy of Dance for five years. He has performed a solo during every dance recital since he started, and he said he plans on dancing for at least six more years. Every year, he picks his own song. His first year, he dressed up like Michael Jackson and danced to “Thriller.”

His mother said Dupuis loves all kinds of music — from pop to country. He wanted to dance to “Sexy and I Know It” by LMFAO this year instead of “Party Rock,” but she said no.

“He can shake those hips a little too well,” she said, with a laugh. “He can make Shakira jealous.”

Dupuis has been a co-teacher for the 7- to 11-year-old hip-hop class, “The Junior Big Bang Attack,” with Corey Whitfield, 27, every Thursday night for the past year.

Whitfield said Dupuis helped choreograph the students’ competitive dance, which won first place in the group hip-hop division and third place in overall hip-hop.

“(Dupuis) is three years younger than me, but he dances better than me. I'm jealous,” Whitfield said. “This kid can dance circles around me, and I’ve been dancing for 22 years.”

Whitfield said he remembers when he first saw Dupuis dance three years ago. This was before he began teaching at the academy, but he already heard about Dupuis’ talent from others within the community.

“One of my students I trained at a gymnastic facility brought me to a recital. (The student) told me that Ryan was going to do a solo. Immediately, my mouth dropped to the floor. Not only that, but seeing him perform with a group of kids, as well, the way he kept up with the choreography more than some of the kids who have been dancing a longer time, it really puts dancing in perspective. This kid puts one hundred million percent in. He is amazing,” he said.

Colleen Dupuis said her son has had 22 surgeries in his life, recently had two major knee surgeries, was born with a heart defect and has a cyst on his hipbone. He also was diagnosed with Graves Disease, an autoimmune disorder that leads to overactivity of the thyroid glad. Yet Dupuis still keeps going.

“He’s overcome a lot of medical obstacles. You cannot keep him down. Sometimes he feels sore afterwards, but he doesn’t care,” she said. Pirpinelli, the dance academy owner, said, “I think it’s good for the kids in the class to learn that everybody has worth and everybody can offer something. Ryan has a lot of worth.”

Fantastic Speakers lined up for the CDSS Conference 5/18-5/20

From the CDSS:

The 2012 Canadian Down Syndrome Conference is May 18-20 in Toronto.

Remember to register for the conference if you haven't yet - spots are filling up fast. We hope to see you there!

• You can also download the 2012 Conference Preview brochure. Included in the brochure is more information about the conference, including a short list of sessions!
• Download it here: 2.3 MB (PDF file)
• If you have any questions or concerns please email lyng@cdss.ca

Keynote and Endnote Speakers

Our Keynote Speaker: Marlee Matlin

Academy Award winning actress, author, mother, and advocate.

Marlee Matlin received worldwide critical acclaim for her motion picture debut in Paramount Pictures’ Children of a Lesser God, earning her the Academy Award for Best Actress. At age 21, she became the youngest recipient of the Best Actress Oscar, making her one of only four actresses to receive that honour for a film debut. In addition to the Oscar, Matlin was honoured by the Hollywood Foreign Press Association with the Golden Globe Award for Best Actress in a Drama.

Passionate about children, she has also appeared in a number of educational and children’s programs. She can currently be seen starring in Disney’s highly acclaimed Baby Einstein DVD series, teaching sign language to infants and toddlers.

Matlin currently serves as a National Celebrity Spokesperson for the American Red Cross, encouraging Americans to donate blood. She has worked on behalf of closed captioning and was instrumental in getting Congress to pass federal legislation requiring all televisions manufactured in the United States be equipped with closed captioning technology. She also serves on the boards of a number of charitable organizations including Easter Seals, The Children Affected by Aids Foundation, as well as those charities which primarily benefit children. In 1995, Matlin served as Chairperson for National Volunteer Week and was honored in a White House Rose Garden ceremony by President Clinton. In 2006 Matlin was honored by AOL as “Chief Everything Officer,” highlighting the important contributions of mothers, both home and work environments.

Our Endnote Speaker: Dr. Dave Williams

Astronaut, medical doctor, and parent advocate.

With a passion for healthcare and risk management, prior to entering the Canadian Space Agency's program, Dr. Dave Williams worked as an emergency room doctor and later as director of emergency services at Sunnybrook Health Sciences Centre in Toronto. Formerly the director for the McMaster Centre for Medical Robotics, where he led a team dedicated to developing innovative technologies to assist the development of local and remote patient care. July 2011 marked a new journey for Williams as he became President and Chief Executive Officer of Southlake Regional Health Centre.

Dave Williams joined an exclusive club when he blasted into space aboard the Space Shuttle Columbia, and again on Shuttle Endeavour where he walked out into the great beyond. Having also lived and worked in the world's only underwater ocean laboratory, he became Canada's first dual astronaut and aquanaut.

A true Canadian hero, Williams is down-to-earth with a compelling and unique approach to peak performance, environmental stewardship, our futures and risk management.

2012 Speakers and Sessions

Sessions in Red are Self-Advocate Friendly

Sessions in Blue are Self-Advocate Only

1. Sara Bingham: Enhancing Language and Lessening Frustration
2. Emily Bolyea-Kyere: An Introduction to the Best Buddies Friendship Program
3. Patrice César: Film Presentation: Trisomie 21 Défi Pérou (translated title: Up with Downs: The Peruvian Challenge)
4. Dr. Brian Chicoine: Promoting Health for Adolescents and Adults with Down Syndrome
5. Jim Cochrane: Step by Step- A Lifetime of Transitions 
6. Joe Dale and Mark Wafer: Employment Options for Adults Who Have a Disability
7. Maria Dellapina, Specs 4 Us: Children's Vision Awareness for Parents and Guardians
8. Sujeet Desai: My Story: Improvising Disability with Multiple Intelligence
9. Dr. Koch: Whats Next: Politically, Practically, and Socially (Bioethics of Prenatal Screening)
10. Laura LaChance: Dental Care and Down Syndrome
11. Barbara Laird: Before Behavior Begin
12. Arleigh Luckett and Kristy Simons: Potty Time- A Whole Body Approach to Toilet Learning
13. Marlee Matlin: Self-Advocate Meet & Greet 
14. Dr. Dennis McGuire: Promoting Strengths and Creative Potential in Persons with Down Syndrome
15. Mercer Family: Leaving Home
16. Karen Meredith Blott: Getting What You Want: Why You Need to Consider Personality
17. Lorraine Paquin, Jullian Paquin, and Nicole Paquin: Advocacy and Action
18. Dr. Gordon L. Porter, CM: Making the Case for Inclusion: Strategies for Parent Activists
19. Dr. Mary Pothos: Medical Issues in Children with Down Syndrome: Everything You Ever Wanted to Know and More
20. Erin Sheldon: Using Technology for Inclusion
21. Sarah Strathy and Maryanne Bruni, Silver Creek Preschool: Total Communication Approach in an Integrated Pre-school
22. Catherine St. Cyr: The Benefits of the Montessori Experience for Children with Down Syndrome
23. Surrey Place Centre: Caregiver Tools and Strategies for the Health of Boys and Men with Down Syndrome
24. Surrey Place Centre: Caregiver Tools and Strategies for the Health of Girls and Women with Down Syndrome
25. Surrey Place Centre: What You Need to Know… All About Your Health 
26. Voices At The Table Advocacy (VATTA) Committee: Down Syndrome: The Evolution