Thursday, October 31, 2013

State panel begins work after Maryland disabled man’s death in police custody

FREDERICK, Md. — The death of a man with Down syndrome in the custody of sheriff’s deputies has helped inspire a new Maryland commission to improve interactions with people with developmental disabilities.
Special Olympics Chairman Timothy Shriver said Monday that Robert Ethan Saylor’s legacy will live on through the commission’s work.
Gov. Martin O’Malley created the new Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities after Saylor’s death. It includes state public safety officials, prosecutors, police agencies and advocates for people with disabilities. The first meeting was Monday.

Wednesday, October 30, 2013

‘Downistie,’ the Dutch soap opera starring only people with Down syndrome

from Dangerous Minds:
A couple of years ago, a Dutch talk show on the Nederland 3 channel called De Wereld Draait Door (“The World Keeps Turning”; can also mean “The World Is Going Crazy”) tried an experiment, broadcasting for 12 weeks a soap opera in which all of the characters—and actors—have Down syndrome. The show is called Downistie (punning on Dynasty; this may be obvious but I didn’t really get it); each episode lasts three minutes.
The show has been both popular and controversial, according to reports. De Wereld Draait Door has been described on Wikipedia as a talk show with “news, information, television bloopers and general entertainment,” plus “every day there’s a live performance of a band in the studio.” It sounds a little like The Daily Show. So perhaps, even if Downistie is meant “seriously,” it’s a little as if it appeared at the end of, say, Conan. Boosters have touted the fact that the viewership is as high as a million people per episode—no mean feat in a country of 16 million people—but it’s unclear how many of those people were already watching De Wereld Draait Door anyway.
According to the Greetings from Holland blog, the actress who plays housewife and mom “Vicky” is named Sara van Ketel. She says (translation cleaned up a little):

I didn’t have to do auditions, I simply can act. I just want to be famous. I have always wanted it. I am already, a bit. In the supermarket or in the subway, people ask me, “Were you on TV?” And then I answer, “It is possible” ...  I think it is great that I act only with other people with a handicap. They are all my friends. Maybe other people think this is a crazy project, but I think it is quite normal. And we cannot do anything to change the fact that we have the Down Syndrome, right? I have suffered from bullies, mostly kids, who scream on the street: “mongoloid!” But I do not scream anything back. ... I do not kiss during the footage. I think it is not appropriate. I only kiss my real boyfriend in my real life. I have already watched some scenes on the television. I am enormously proud of myself.

Tuesday, October 29, 2013

a place that four women with disabilities can call their home

MOUNT OLIVE TWP.  – Four women with developmentally disabilites from the area will soon have a new home thanks to the parents of a young woman with Down syndrome and a statewide advocacy organization.
And while the new home is no doubt a God-send to the four women, an estimated 8,000 other people with disabilities who cannot live independently remain on a waiting list for group housing that is expected to last for another 15 years.

The newest group home in Harmony Township is under the auspices of Advancing Opportunities, formerly known as Cerebral Palsy of New Jersey, with its northern office in Budd Lake.  It is the organization’s sixth group home in the region, serving  41 residents. The first home opened in Randolph  in  August 2002 while others have opened in Roxbury, Parsippany, Emerson and Demarest.
The latest home was named in honor of Melissa Gentle, a 37-year-old woman with Down syndrome.  An open house to celebrate the completion of the home was held on Tuesday, Oct. 22.
Valerie Weber, residential coordinator at the Advancing Opportunities Budd Lake office, said the opening comes four years after Gentle’s parents first began seeking support for a new group home for their daughter.
The residents range in age from 28 to 60 and have varying degrees of disabilities, though none require constant one to  one support.

Monday, October 28, 2013

Crestview man: 'I used to have Down syndrome'

CRESTVIEW — Life for Danny Parker is much like that for anyone else. He gets up, sometimes takes a spin on his four-wheeler, reports to work and comes home to his family.
Having Down syndrome hasn't deterred him, Parker's family members say. To his customers in the Wal-Mart garden center, he's another helpful employee.
"I never thought about it much," Paige Parker, his older sister, said. "There's five kids in the family and we didn't treat him any different than anyone else. He was aggravating at times and loving at times, just like any other brother."
Danny Parker has worked at Wal-Mart for 20 years, and is well known to many shoppers. With a restricted driver’s license, he is often able to drive himself to and from work.
"The customers love Danny," Paige said. "He has regular customers who come in and ask for him. Wal-Mart's been very good to them.”

Sunday, October 27, 2013

Annie's Mailbox: Parent of child with Down syndrome recalls this inspiring poem

by Kathy Mitchell and Marcy Sugar from the Poughkeepsie Journal:
Dear Annie: When I was in high school, I collected articles that I found inspirational and motivational. One of my most prized pieces appeared in Ann Landers’ column in 1978. It was “Heaven’s Very Special Child” by Edna Massimilla, who had a daughter with severe disabilities. For some reason, I cut out this letter and glued it to a piece of blue construction paper.
I carried it with me through college when I studied to be an occupational therapist. After I graduated, I packed up all of my college “memories” and stored them at my parents’ house. I married and worked for 15 years in hospitals, rehabilitation centers, nursing homes and home health care.
When my third son was born with Down syndrome, he shook, rattled and rolled our world. I had never worked with children with special needs, nor did I have any idea what it was like in “their” world. I was extremely hurt, angry and all the other emotions attached to grief. After three days, I remembered that column and, amazingly, found it at my parents’ house in the first box I opened.
My son is now 20 years old and has just graduated from high school. Yes, we have had trials, challenges and sadness, but we also have had miracles and pure joy. Would you be able to reprint this piece? My copy has yellowed, and this time, I would like to frame it.
— Missouri
Dear Missouri: How prescient of you to have cut this heartwarming piece out of the newspaper when you were only in high school. We are, of course, delighted to reprint it. The first time it appeared, hundreds of readers asked for copies. We know it has touched thousands over the years.
Mrs. Massimilla is a remarkable woman — 97 years old, still writing, playing the organ and helping others.

Saturday, October 26, 2013

Dog helps boy rise above disabilities

by Bill Grimes from Effingham Daily News:
EFFINGHAM — When we last featured George the golden doodle in July 16, 2012, edition, he was just a little puppy getting acquainted with the Iffert family before moving on for extensive training.

George was “hired” by the Ifferts to be a service dog for young Hunter Iffert. Hunter, who was born with Down Syndrome, has multiple disabilities, and his family felt that a service dog would be helpful by the time Hunter started kindergarten this fall.

While George’s training wasn’t quite complete by the time school started in August, he finally came back home this month. And, he’s begun going to school with Hunter at Dieterich Elementary School.

George stayed with the Ifferts for 11 months before traveling to Orem, Utah, in March for service training with Molli Baker, director of training for Noelle’s Dogs Four Hope, a Colorado-based company that has trained dozens of service dogs for children with special needs.

Baker said the training she provided was critical to George’s success as a service dog.

Friday, October 25, 2013

Jim Dial, who served as judicial center mail clerk for 11 years, died Friday morning at the age of 50

from the Covington News:
Beloved local Jim Dial, who served as judicial center mail clerk for 11 years, died Friday morning at the age of 50.
Dial, who had down syndrome, was known for his sunny personality and loving attitude. He inspired the same attitudes in others.
“For me, Jim was just an inspiration as to how we all should live life to its fullest, and with his challenges he did that. He was an inspiration on how we should all look at life, with or without challenges,” said Superior Court Judge Horace Johnson.
Dial was first appointed to deliver mail to the courts by former county chairman Davis Morgan; fellow employees often praised Dial’s dedication.
“Jim just came in and stole everyone's heart,’’ said Superior Court Clerk Linda Hays at a reception for Dial in 2009. "We look out for him - from the bottom of the building to the top. And I think that having him here has given us all an insight into down syndrome. We have all learned how intelligent he is and what a sense of humor he has. He has a heart bigger than the whole state, and he takes him job very seriously.’’

Thursday, October 24, 2013

Myths and Facts: The Convention on the Rights of Persons with Disabilities (CRPD)

from the Arc:
For the last two years, The Arc has been working with numerous disability advocacy groups to garner support for the Convention on the Rights of Persons with Disabilities (CRPD), which will promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by persons with disabilities across the globe. There are many misconceptions about the CRPD, and we would like to clarify some of the most common myths and facts.

Myths and Facts About the CRPD:

Myth #1:  Sovereignty will be lost if the treaty is ratified
FACTS: Sovereignty means that the U.S. is protected as an independent governing body and no outside organization (like the UN) or another country can compel the U.S. to do anything. The same RUD (RUD = legal binding condition added to treaties) is attached to the Disability Treaty that is attached to all human rights treaties passed by the U.S. Senate in order to protect U.S. sovereignty ensuring that in no way can the treaty compel the U.S. to do anything and that any changes in law would have to go through our own traditional legislative procedures.

Myth #2: The treaty will require funding and support for abortion
FACTS: Abortion is not mentioned in the treaty but opponents of the treaty  lead folks to think it is.  There is nothing in this treaty that changes abortion rights in the U.S. It simply states that people with disabilities should have the same access to health care as people without disabilities. It is a statement of non-discrimination NOT a change in U.S. law or policy.

Myth #3: The treaty will take away homeschooling/parental rights
FACTS: The CRPD is a non-discrimination treaty that does NOT change our law but confirms our commitment to disability rights and allows us to impact disability rights globally. That means NO changes to U.S. laws covering parental rights laws or homeschooling.

Read this news article to learn more.

Wednesday, October 23, 2013

LEAD Coalition Urges Swift Action on ABLE Act

from the LEAD Coalition:
Sixty-one LEAD Coalition member organizations and supporters wrote to congressional sponsors of the Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647) encouraging enactment this year. Read the letter.

Today, over five million Americans have Alzheimer’s disease -- and millions more
have vascular, Lewy body or frontotemporal dementia. It is expected that 13
million or more Americans will have Alzheimer’s disease by 2050, barring a major
scientific breakthrough in the near-term. For many individuals and families facing
the enormous financial toll of a typically decade-long battle with Alzheimer’s
disease or a related dementia,
i the ABLE Act will provide an important tool to
avoid impoverishment and dependence on public assistance programs. This is
consistent the intent of the National Alzheimer’s Project Act (Public Law 111-375)
and the resulting National Plan to Address Alzheimer’s Disease Goal 3, Strategy
3.C: Assist Families in Planning for Future Care Needs
Leaders Engaged on Alzheimer’s Disease

The ABLE Act will allow individuals with physical, intellectual or cognitive
disabilities and their families to save their private funds for the future just like
every other American. The ABLE Act builds upon a highly successful taxdeferred
education savings platform to begin addressing the challenges of paying
for quality long-term care services by establishing a new subsection within
Section 529 of the Internal Revenue Code. Individuals with disabilities would be
permitted to establish ABLE accounts into which they and others could make taxdeferred
contributions. ABLE account funds then could be used for essential
expenses including medical and dental care, community-based supports,
assistive technology, housing and transportation. Such qualified expenditures
would supplement, but not supplant, benefits provided through private insurance,
Medicaid, Supplemental Security Income (SSI), the beneficiary’s employment,
and other sources. The legislation also contains Medicaid fraud protection
against abuse and a Medicaid payback provision when the beneficiary passes

Tuesday, October 22, 2013

Parents sue deputies in death of man with Down syndrome at Maryland movie theater

By M. Alex Johnson, Staff Writer, NBC News:

Saylor's full-time aide told investigators that she warned the deputies that the 294-pound Saylor, who used a wheelchair, would "freak out" if they touched him.The parents of a man with Down syndrome on Thursday filed suit against three Maryland sheriff's deputies for causing his "violent, terrifying, and painful death" as they tried to remove him from a movie theater early this year.Robert Ethan Saylor, 26, of New Market, Md., asphyxiated on Jan. 12 after the three Frederick County deputies, who were moonlighting as mall security officers, dragged him out of the theater in handcuffs and restraints.

Monday, October 21, 2013

Cheerleading a Charmed Life

The tryouts were closed to everyone, parents included.
“She had done dance forever and so we thought she’d do dance,” said Kristy Schnetter. “But she didn’t want to do that. She wanted to be a cheerleader.”
Aspyn Schnetter, 15 and a freshman at Senior High this year, finished at Lewis and Clark Middle School in May and decided she was going to try out for the high school’s cheer squad.
For Kristy, it was a little concerning. But not necessarily surprising. It was just one more example of her daughter’s indomitable enthusiasm and life-loving drive. Aspyn has Down syndrome.
And so Kristy knew the experience would be fraught with peril. She wanted to be in that tryout for no other reason than to at least show support for her daughter.
“I was really nervous,” Kristy said.

Sunday, October 20, 2013

Why Down Syndrome Doesn't Define My Son

What makes a person's story a success story? Is it fame, is it overcoming great challenges, is it genius?

If it is, Derek's story is a success story on all levels.

There is another component that I believe makes Derek's story a success story. That component is Adam's genius of communication.

You can see Adam's genius at work in the bond that he shares with Derek. You can also see Adam's genius at work in the way Derek is able to fully utilize and enjoy the gifts he has been given. His genius starts its work where most people stop. Adam had the desire and dedication to go beyond Derek's challenges, to learn who Derek is as a man.

I've seen the genius of communication at work in my life, and its power is amazing. I was introduced to this genius by the lady with the blue folder.

I met her when she visited my hospital room the afternoon after my son was born. Earlier that morning, I learned my son had Down Syndrome, and my emotions were still very raw.

When the lady with the blue folder walked in my room, I instinctively knew that folder she held in her hand was full of definitions, statistics and medical jargon. Wasn't being told your child had Down Syndrome enough to process for one day? The last thing I wanted right then was some stranger giving me an education on what having a child with Down Syndrome meant. She did give me that very education, but not in the way I expected.

Saturday, October 19, 2013

Olympic runner’s world record attempt to benefit Nat’l Down Syndrome Soc.

By Catherine Holland from AZ

PHOENIX – When professional runner Andrew Lemoncello and his wife, Julie, welcomed their first child, Isla, in June, they were stunned to learn that she has Down Syndrome.
“It kind of took us by shock,” Lemoncello, who lives in Flagstaff, told 3TV’s Kaley O’Kelley.

Wednesday, October 16, 2013

Dr. Vellody, the Medical Director of the Down Syndrome Center at the Children’s Hospital of Pittsburgh

DSR Episode #23: Dr. Kishore Vellody!

Dr. Vellody is the Medical Director of the Down Syndrome Center at the Children’s Hospital of Pittsburgh. This guy REALLY understands the medical issues faced by our children!
Because the center that he directs is specialized, he sees an incredible amount of patients with Ds.  This centralized experience is invaluable in correctly diagnosing and treating our wonderful children.  To further brag about our guest, he is incredibly personable and easy to talk with.  He explains the medical science behind several issues during the episode in a very clear and concise manner.
Dr. Vellody has a brother with Ds and a wonderful family with four children!  If you ever wondered what was going on in the picture (at right), it is little Kishore and his brother.  I think the chair was later used for the set of the Brady Bunch.
During the episode we discuss the following medical issues:
  • Heart Surgery – How to choose the right hospital/staff
  • The common cold for those with smaller nasal passages
  • Sleep Apnea – Sleep studies are important!  This can have chronic affects if left untreated.
  • The neck instability thing (Atlantoaxial Instability) – We learned a lot about this
    • It is much rarer than I thought (a few in a thousand)
    • They do x-rays to diagnose it but an x-ray is a poor tool
    • There are symptoms to look for – Dr. Vellody can spot them
    • Don’t worry about it so much, but don’t drop your kid on his head if you can help it.
    • DS Medical Registry
    • Health Supervision for Children with DS – Apparently our kids did come withinstructions!
Dr. Vellody has also started his own podcast to share his medical knowledge (which is how we found him!).  Have you ever left a doctor’s appointment and said to yourself – ‘I just hope I could remember everything he said’?  Wouldn’t it be cool if you could just go to his podcast and hear it all again while you were at the gym or driving in your car?  Well that all possible now.  Here is the link to his podcast in iTunes.  And here is the link to his web page (Children’s Hospital of Pittsburgh).
Thanks for listening!  Remember to go to iTunes and give us a great review and subscribe.  You can also leave us comments on this site!  Have a wonderful DS Awareness Month and a great time at your local Buddy Walk/Step Up event!
~Down Right Awesome Dads
Download Down Syndrome Radio, Episode #23.
Better yet…subscribe, rate us and leave a comment on iTunes!

Tuesday, October 15, 2013

10/16 Conference Call/Webinar: Update on DS Cognition Research & Clinical Trials


Register today!
Wed, Oct 16, 2013 
1:00 pm ET/10:00 am PT
Cost: Free

This webinar brought to you by:

Down Syndrome Affiliates in Action


Down Syndrome Research and Treatment Foundation
The Research Landscape: Update on DS Cognition Research and Ongoing Clinical Trials

Available to Nonmembers! 

Down syndrome cognition research holds enormous potential for people with Ds — but have your members heard?

This webinar will give affiliate leaders and members of the Down syndrome community the information families need about how science is working to deliver increased opportunity, independence, and fulfillment to individuals with Down syndrome. Researchers are making great strides towards delivering improved learning, memory and speech, and towards preventing the additional cognitive decline people with Ds experience as they age. Find out about this progress, including ongoing clinical trials, when we detail recent significant advances in the field of Down syndrome cognition research in this free online discussion.

This informative, accessible presentation is designed specifically to prepare you with accurate, up-to-date information, and will cover:
  • How to communicate the latest research advances and their significance for individuals with Down syndrome in enhancing their daily lives;
  • How the Down syndrome community is essential to achieving successful new therapies, and what you can do to get involved;
  • How participation by individuals with Down syndrome benefits not only people with Ds but also benefits those in the broader community;
  • How working together to leverage support can significantly increase funding for Down syndrome research, and speed the development of safe, effective therapies to improve quality of life for people with Ds.

We hope you will join us for this free webinar to help you learn more about the significant advances and exciting progress that is currently underway. 

Monday, October 14, 2013

Life-Changing Lessons for Parents in the UAE

by Dhanusha Gokulan from the Khaleej Times:
Ghada Omar, mother of a one-year-old with Down syndrome is extremely active on Facebook and other social networking websites. Omar’s statuses and updates revolve around her need to find information about her son Hassan’s condition. The boy was diagnosed with Down syndrome at birth.
Apart from looking for support groups online, Omar seeks to raise awareness and gather information about special needs kids through social media. “When Hassan was born I was completely ignorant. I did not think that something like this would happen to us, especially since our family has no history of Down syndrome. But discovering that my child has Down syndrome turned by life 360 degrees. It tests you as a parent on so many levels,” said Omar.

Sunday, October 13, 2013

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

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.

Saturday, October 12, 2013

Avon Park cheerleader brings special touch to team

AVON PARK - In many ways, Mackenzie Riffle is a regular, bubbly 16-year-old high school girl.
She can talk incessantly about boys, likes to laze around in front of the TV, especially when Nick Teen's "H2O" and Fox Network's "Glee" show is on, and loves to cheer for the Avon Park High School varsity cheerleading team.
But in other respects, she's a little different and, perhaps, a lot more special to her cheer captain and longtime friend Caylie Wall and the school's varsity cheer coach Tammy Williams.
Mackenzie, who has been going to dance classes since she was a child and can do killer splits, has Down Syndrome.

Friday, October 11, 2013

Magic shows to create awareness on special persons' rights

MANGALORE: Suresh Nayak, 41, hailing from Puttur, is all set to launch a campaign to spread awareness on the rights of differently-abled persons. 

Nayak, who was born with Down Syndrome, will enthrall students of government schools acrossDakshina Kannada with his magic shows. Titled as Magic Down Syndrome, his shows will spread the message-'Mental retardation is not a disease'. 

Nayak holds a world record for having the longest tongue and four national recognitions for his various skills. 

Umesh Nayak, brother of Suresh, said, "Suresh is trained by magicians at Mangala Magic Circle. He has preformed magic shows and showcased his memory power at more than 1,000 stages. He will launch his show in the district after Dasara holidays," he said adding that the programme can be extended to schools outside the district if he gets sponsors. 

Suresh is trained in 20 types of magic including production box, feather tricks, train creation and balls tricks. 

Thursday, October 10, 2013

Will you sign the ABLE Act?

by Gina DiPietro from NBC 14:
A local organization is lobbying for rights of those with disabilities, and they're hoping you can help!
Smile on Down Syndrome says the ABLE Act, which stands for Achieving a Better Life Experience, allows those with disabilities to save money in a tax-free savings account. 
Executive Director Nikki Davis says those individuals can only save up to $2,000 at this time. If the ABLE Act passes, Davis says they can save up to $100,000 without losing benefits.
Davis says, "it's a savings account that they can use to save for healthcare expenses, educational expenses, things that sometimes we take for granted."
Congressman Larry Buschon and Senator Joe Donnelly have both come on board with the project. You can sign the act online in a matter of minutes by clicking here

Wednesday, October 9, 2013

School principal drags boy with Down syndrome WZVN News for Fort Myers, Cape Coral

Neptune Beach, FL - A mother and father are looking for justice after they say their child was pulled from his classroom by his private school principal and badly hurt.
Meibol and Cesar Suarez adopted their grandson, who has Down syndrome, after his parents were no longer able to take care of him.
They enrolled him in a school for children with learning disabilities, where they believed he would be safely taken care of.
But according to Neptune Beach Police Department, about three weeks ago, the 11-year-old was harshly disciplined in class and criminal charges could follow.
"This is my child. I have to protect my child," said Meibol Suarez.

Tuesday, October 8, 2013

Katy Perry contest: Verrado High School creates inspirational video for GMA contest

Can you hear Verrado High School ROAR?
On Sept. 6, ABC's "Good Morning America" and pop star Katy Perry teamed up to challenge high schools across the country to create the best music video using Perry’s song “Roar.”
The school that creates the best two-minute video will win a live Perry concert at their school on Oct. 25.

Verrado High School in Buckeye saw this challenge and decided to create their own rendition.
A Verrado student told ABC15 their video showcases a senior born with a learning disability, who has become an inspiration on their campus.
She has been on the cheerleading team all four years and has been its heart and soul.
The contest ends Oct. 1, and the winner will be notified Oct. 10.

Monday, October 7, 2013

Woman Molested by Bus Driver as Teen Settles for 700K

By Sasha Canady from
A developmentally disabled woman will receive $700,000 to settle her lawsuit after being molested as a teen by a school bus driver.
The woman, identified only as S.R., has Down Syndrome and was 15 when the incident happened, according to court papers. The papers state she was one of two children on the bus on its way to a Ho-Ho-Kus school in 2007 when the bus driver touched them inappropriately. reported that the Bus Driver, Richard Noto, was arrested the day of the incident after S.R. told school officials, who called the police. Noto pleaded guilty to aggravated criminal sexual contact in 2009, and was sentenced to 90 days in jail and five years of probation.
Later, S.R. filed a lawsuit against the bus company, alleging Laidlaw Education Services was negligent in hiring and supervising Noto, said The Star-Ledger.
Laidlaw Attorneys said in court papers that the bus company followed all legal obligations when hiring Noto, including a background check.

Sunday, October 6, 2013


Awakening Angels’ lead researcher Dr. Alberto Costa was recently bestowed the National Down Syndrome Congress’s (NDSC) prestigious Christian Pueschel Memorial Research Award. This established award, dedicated to the late son of Dr. Sigmund Pueschel, honors researchers whose contributions and advancements aid and propel society’s understanding of Down syndrome. Sadly, Dr. Costa will be the last researcher to receive the award directly from the hands of Dr. Pueschel.  We have recently learned that Dr. Pueschel died Sept. 2, at the age of 82 years, leaving behind an amazing legacy of accomplishments toward the betterment of the quality of life of those with Down syndrome.
The connection between Dr. Costa and Dr. Pueschel predate the award by more than a decade.  The two met in 1998, and instantly became good friends.  In 2001, Dr. Pueschel asked Dr. Costa to write a chapter for the second edition of his classic book A Parent’s Guide to Down Syndrome: Toward a Brighter Future, which has been used as a tool for parents and professionals alike in further understanding Down Syndrome. As a consequence of this collaboration, the second edition of The Parent’s Guide (as it is frequently referred to in parent community)  ends with a chapter contribution by Dr. Costa, which touches on the promise of  biomedical research and the future of Down syndrome.

Saturday, October 5, 2013

UK Theatre Review: Up Down Boy

©Richard Davenport 2012. Salisbury, UK. Salisbury Playhouse Studio. Up Down Boy

Up Down Boy by Sue Shields and the Myrtle Theatre is coming to theNormansfield Theatre Teddington on Saturday 9 November at 7.30pm.

Booking: 0333 1212 300 or

Review by Hayley Goleniowska, mum and author of award-winning blog Downs Side Up

Every once in a while an experience shifts 
the tectonic plates of your soul. 
Powerless to stop the raw emotions held beneath, 
they flow forth and you have no choice but to face them, 
accept and deal with them before filing them away 
and carrying on your life, a little bit wiser.
Watching the breathtakingly powerful Myrtle Theatre play Up Down Boy by Sue Shields was, for me, such a moment. For in one hour it condensed, amalgamated and highlighted all the challenges and worries of parenting a child with Down’s syndrome and made me smile and laugh aloud at the lessons we learn, the silver linings and the eccentricities that make our worlds so wonderfully unique.
Sue crafted the play together with her son Nathan Bessell who plays Matty, a teenager with Down syndrome. We watch as he and his mother Odette, perfectly portrayed by Heather Williams, prepare for him to leave for college.
©Richard Davenport 2012. Salisbury, UK. Salisbury Playhouse Studio. Up Down Boy