Friday, August 31, 2012

IPC reject DSISO's plea to be recognized


28 April 2008 PV/IPC
Swimming for Individuals with Down Syndrome

Dear Geoff,
In reference to your email dated 15 February to Sabine Mikulas, and all previous communication on the interest of the Down Syndrome International Swimming Organisation (DSISO) to become a member of the Paralympic Movement, and after a further review of the facts you outlined, we have reached the following conclusions:
  1. It is understood by both IPC and DSISO that not all persons with Down Syndrome (DS) meet the criteria for intellectual disability, but it is not all that common (e.g. translocation and mosacism). In the likelihood of occurrence, those particular athletes with DS (without associated intellectual disability) may fit under the current Functional Classification System of IPC Swimming on the condition they meet the requirements for locomotor disability in accordance with IPC Swimming rules and regulations (IPC Swimming Classification Manual, Section 1 – Swimming Classification). There is no need for those athletes to be recognized as a separate disability group within the IPC. The comparison made to athletes with visual impairment or cerebral palsy that happen to have an intellectual disability does not stand, as both impairments are qualified as physical impairments (which is not the case for Down Syndrome).
  2. Trisomy 21, the most common form of DS, almost exclusively manifests itself with an associated intellectual disability. Within this perspective, according to the IPC Constitution Article 4.1.2, the IPC can only recognize one organization as the sole representative of a specific disability group. In the case of athletes with an intellectual disability the IPC Member is currently INAS-FID. Swimmers with an intellectual disability, including Down Syndrome swimmers with associated ID, have to meet the eligibility criteria of the respective International Federation (INAS-FID). On the basis of these conclusions, the proposal of DSISO to apply for IPC Membership is no longer considered by the IPC.
Kind regards,
Xavier Gonzalez
Chief Executive Officer
International Paralympic Committee

cc Tim Reddish, Chairperson IPC Swimming
     Sir Philip Craven, IPC President

Thursday, August 30, 2012

Marathon runner with Down's syndrome carries Paralympic torch in West Hendon

By Emma Innes from Times Series:
The Paralympic torch was carried by five torchbearers as it passed through West Hendon this morning.
The torchbearers included Simon Beresford, 44, from Lichfield.
Mr Beresford was the first person with Down’s syndrome to run the London Marathon.
He has now run eight marathons raising more than £20,000 for the Down’s Syndrome Association.
Mr Beresford was accompanied by Sara Clarke, also 44, who has spent the last 20 years working at Birmingham Children’s Hospital.
The torch travelled 92 miles from Stoke Mandeville, the home of the Paralympics, to the Olympic Park during a 24 hour period.

Wednesday, August 29, 2012

High School Students Express Support for Shooting Victim

from CBS Baltimore by Derek Valcourt:
A violent start to the school year in Perry Hall after a student opens fire in the cafeteria.
Derek Valcourt has more on how the students are coping the day after the shooting.
Several hundred students and parents gathered around the flagpole at Perry Hall High School before the start of morning classes for a student organized prayer vigil in honor of the victim, 17-year-old Daniel Borowy.
“I would rather it happened to me than him,” said Kayla Finn.
“I’m praying for him and his family and hoping that he can recover soon and be back to the Daniel that I know he can be,” said Kirsten Elasser.
Some student wore T-shirts in honor of the guidance counselor credited with stopping the gunman.

from CBS Baltimore by Meghan McCorkell:
Seventeen-year-old Daniel Borowy remains in critical condition at Shock Trauma. His school community came together Tuesday to pray for him. Meghan McCorkell has more.
On the first day of school after the shooting, students gathered around the flagpole to reflect on one of their own who’s not here.
“He’s an innocent kid and it could have happened to anyone,” said freshman Kayla Finn.
Borowy was shot in the back when a fellow student opened fire in the crowded cafeteria.
His family released a statement saying, “On Monday, August 27, 2012, our son, Daniel was critically injured on his first day of school. We would like to personally thank school personnel who quickly responded, getting Daniel to safety.”
Just steps from the driveway of the high school is a sign urging the community to pray for Daniel. Many students like Michael Haley are openly showing their concern. Borowy lives right down the street from him.
“He always comes around and he always has a smile on his face,” Haley said.
“He just has an amazing personality. He’s just one of a kind,” said Kristen Elsasser.
Amidst heavy police presence, school officials held classes to bring the students back together.
“Our students have been very eager to talk to their teachers and now rallying around the victim and rallying around the community to help in any way they can,” said Perry Hall High School Principal George Roberts.
That sense of community is helping everyone there heal in the wake of this tragedy.
A Facebook page calling for prayers for Daniel Borowy continues to grow, with support coming in from all over the world.
Perry Hall plans to hold a community meeting sometime next week so students and parents can come together to talk about the shooting.

Vols, Lady Vols Connect With Hoops For Hope

from the Chattanoogan by Stan Crawley:
The Tennessee men's and women's basketball teams participated in the game they love Saturday morning at Farragut High School. For the fifth-consecutive season, they celebrated that love of the game with youngsters from the Down Syndrome Awareness Group of East Tennessee at Hoops For Hope.
Started as a Boy Scout project by Trey Sexton to make dreams come true for parents and children of the DSAG of East Tennessee, Hoops For Hope has become an annual event that Big Orange round-ballers and their coaches look forward to as much as the youths whom they cheer and play alongside in organized games.

While Trey Sexton is away on a two-year mission trip, his father, David Sexton, said the torch has been passed to Trey's sister, Allie. She coordinated this year's event, and the roar of the crowd and the smiles on everyone's faces signaled that year five was another rousing success.

"It makes me feel really proud as a dad, because you try to teach your kids that if you desire to do good things, then there will be support for you to do that," David Sexton said. "So, it's awesome for us to see that we have the support of UT and the Down Syndrome Awareness Group to make this happen. It benefits not only them (DSAG), but everyone who is here at the event.

"I think it's really neat to see that these athletes who are so dedicated to a sport and have so much invested in that will take the time out from their athletic endeavors to come and support the community in a really simple, but powerful, way."

UT Head Women's Basketball Coach Holly Warlick enjoys seeing the response of the participants, both from DSAG and the teams.

"My favorite thing about this event is to see these young people have a smile on their faces," Warlick said. "They are having fun, enjoying themselves and they are playing with people they look up to on the men's and women's basketball teams.

"The athletes absolutely love it, too. They love to be around these kids and coming to this event. It's wonderful for our programs to once again be a part of it."

Vol junior Trae Golden said the event is very special to him and his teammates, because they have built relationships through the event.

"It's huge, because we come back and see the same people and how much they've grown and how much they love basketball," Golden said. "It's a great thing to give back to the community, and we couldn't be happier to be here."

"We play basketball every day, and we sometimes start to take it for granted. These guys - they score and are so excited. It's just great to see their enthusiasm."

Tuesday, August 28, 2012

Lowcountry Down Syndrome Society Announces October 6 Grand Marshal for the Buddy Walk: Paula Deen

from The Creative Coast:
Join Savannah’s own bestselling author, restaurateur and Emmy Award-winning Food Network television star Paula Deen as she laces up her sneakers as Grand Marshal of the 2012 Buddy Walk on Saturday, October 6, 2012. Deen will be leading walk participants in the one mile fundraising event around historic Forsyth Park in Savannah, Georgia.

Thousands of people are expected to attend the event, which raises awareness and funds for local programs, including Camp Buddy, that benefit people with Down syndrome and their families. Last year’s
LDSS Buddy Walk welcomed over 4,000 participants.

Paula Deen’s son Jamie Deen, also a bestselling cookbook author and tv personality, sits on the
LDSS board, and has served as Buddy Walk Grand Marshal the past two years.

“As Jamie will not be in Savannah for the Buddy Walk this year, it is my great honor to take his place as Grand Marshal,” said Paula Deen. She added, “I am excited to be part of this uplifting celebration and lend my support in promoting awareness and acceptance of folks with Down syndrome. I’m looking forward to a strong turn out of my Savannah and Lowcountry neighbors and friends at the Buddy Walk!”

The Buddy Walk Program welcomes participants of all ages and abilities. Bring your carriage, strollers, wheelchairs, little red wagons and pets. Don’t leave anyone behind as we stroll around Forsyth Park. The goals are to promote acceptance and inclusion of people with Down syndrome and to positively influence local and national policy and practice. Last year alone, Buddy Walk events nationally raised more that $11.2 million to benefit education, research, and advocacy initiatives, as well as the Night of Champions, Camp Buddy and many other services right here in the Lowcountry and Coastal Empire.

The walk begins at 10:00 am. The Family Fun Festival begins immediately following the walk. The Festival will feature all kinds of activities such as face painting, pumpkin painting,the BOO Boutique, bouncy houses, games, music and refreshments and last until 2 PM. The
LDSS Buddy Walk is one of more than 300 Buddy Walks taking place across the country this October to celebrate Down Syndrome Awareness Month.

Registration forms for the walk are available online at or sign-up starting at 8:30 AM day of the event. Registration is $12.00 per person or $40.00 for a family of four. Registration includes this years limited edition T-Shirt, Lunch and admission to the festival. To learn more, visit or contact John or Candy Bogardus at (912) 728-8505.

About the Lowcountry Down Syndrome Society: The Lowcountry Down Syndrome Society (LDSS) is a support group to benefit people with Down Syndrome and their families through local leadership in support, outreach, education and advocacy. Meetings are held every 4th Tuesday of the month, typically with a guest speaker and social time for families to meet and interact with one another. We encourage people to bring their children. We are an affiliate of the National Down Syndrome Society.

Monday, August 27, 2012

Professor Lejeune – a patron saint of Down’s syndrome?

by Francis Phillips from the Catholic Herald:
The French geneticist’s Cause is needed more than ever
Another good news item from Rome Reports: at the current Rimini Conference of 2012 to discuss the economic crisis, education and inter-religious dialogue there is an exhibition to highlight the life and work of the late Professor Jerome Lejeune, 1926-1994, entitled “What is man that one is mindful of him?” It includes his writing desk, his microscope, his diaries and many photos. Professor Lejeune became world-famous in 1959 when, as a young Catholic doctor and scientist working in the field of genetics, he discovered the extra chromosome that causes Down’s syndrome or Trisomy 21, a common form of mental disability. His discovery opened up a whole new field of research and he was made the first professor of Fundamental Genetics at the Faculty of Medicine in Paris.
However, for Lejeune research was never an end in itself, though it brought him international recognition and, in 1969, the William Allen Memorial Award, the highest academic honour in genetics. According to Wiki, he was now “driven by a single ambition: to find a treatment that would bring relief to his patients as quickly as possible.” He viewed research “as inseparable from treatment and he was horrified as he gradually realised the consequences that misuse of his discovery would have for babies with Trisomy 21”, i.e. that it would be widely used to diagnose and then abort these disabled babies in the womb.
He wrote at the time, “That this rejection of medicine – of the whole biological brotherhood that binds the human family – should be the only practical application of our knowledge of Trisomy 21 is beyond heartbreaking.” According to his daughter Clara, who was to write her father’s biography, “Life is a Blessing” after his death from lung cancer on Easter Sunday 1994, he knew each of the 5000 patients in his clinic by their first name. His daughter said he decided he couldn’t accept abortion “not because he was a Christian but because he knew as a geneticist that life starts at conception.”
Lejeune became friends with another pro-life champion, the late Pope John Paul II who named him as the first president of the new Pontifical Academy for Life. He once told his daughter, without any bitterness, that his championship of life alongside academic research was to cost him the Nobel Prize. It also made him an outcast within the scientific community and his funding was withdrawn. He was not deterred. His daughter remembered that her father once came home to lunch and told the family about a little boy with Down’s syndrome who had seen a programme about pre-natal testing and who had begged him to save him from “those who want to kill us.” Clara Lejeune relates, “He was white and he said, “If I don’t protect them, I am nothing.” Professor Lejeune’s cause for sainthood is now being investigated.
Personally I hope his cause proceeds quickly. Never have we so needed the voices of doctors to defend life, whether those of disabled preborn babies, or now the elderly and sick. Lejeune knew that his mission as a doctor and geneticist was to save lives, not destroy them. When I read his biography I was deeply moved by its portrait of this humble man: a loving husband and father as well as a distinguished doctor. It actually inspired me (never having walked any distance in my life) to undertake a sponsored 25-mile walk in the millennium year 2000 for pro-life societies at university, which were then under attack from other “pro-choice” student groups. Never having done any fund-raising before, I managed to raise over £2000.
On a more personal note, when our youngest daughter was born with Down’s syndrome in 1990, I wrote for advice to Professor Lejeune at his research centre in Paris. He replied in longhand by return of post. I treasure his letter and the memory of this great and saintly man.



In 1958, Professor Jérôme Lejeune, a doctor and researcher at the Necker Hospital in Paris, discovered an extra chromosome on the 21st pair and in so doing discovered the genetic cause of Down syndrome. As the father of modern genetics, he received may international awards for his work, including the Kennedy Prize and the Allen Memorial Award.
Trisomy 21 (Down Syndrome) is not a fatal condition, but a disability caused by a genetic error at conception and the most common single cause of birth defects in humans. Professor Lejeune was convinced that one day researchers would discover treatments that would largely restore the intellectual capabilities of individuals born with Down syndrome. The Jérôme Lejeune Foundation is committed to fulfilling Professor Lejeune’s dream, and in collaboration with researchers around the world conducts and funds research leading to targeted treatments to address issues related to cognition, memory, and speech, as well as the other comorbidities caused by the extra 21st chromosome.
Every year the Jérôme Lejeune Foundation provides funding to over 60 research teams who are pursuing treatments for genetic intellectual disabilities in the US, Canada, France, Israel, Italy, Lebanon, Spain, Switzerland, the UK, and other countries. The Foundation is the world’s oldest and largest funder of research to find treatments for Trisomy 21 and other genetic intellectual disabilities. Our grants are 100% funded by private donations.
The Foundation also supports clinical research through the the Institut Jérôme Lejeune, in Paris, such as the ACTHYF program which aims to establish a link between the use of folinic acid and thyroid hormone to improve the psychomotor development of toddlers with Down syndrome. The Institute offers lifelong, specialized medical care through a medical and paramedical team. The Institut Jérôme Lejeune treats over 3,600 patients annually from France and abroad.
All of the Jérôme Lejeune Foundation and its subsidiaries’ work has an ethical label which ensures the utmost respect for the value of each and every human life. The Foundation will only finance research that respects human life from conception to natural death. We do not support any projects that use products derived from human embryos or fetuses as research material.


from the Down Syndrome Radio Podcast:
Our guest on this episode of the podcast is Mark Bradford, President of the Jérôme Lejeune Foundation, USA.  I had the pleasure of meeting Mark at the kickoff event for the Race Across America.  He is the Down Right Awesome Dad of seven children.  We probably could have spent the entire hour discussing how one handles seven kids, but the work being done by the Lejeune Foundation is so interesting we’ll have to save that topic for another show.  Mark gives us some history of Dr. Lejeune and the foundation that bears his name.  We also discuss how the foundation strives to achieve the three fundamental points of its mission.
Download Down Syndrome Radio, Episode #9 or listen via iTunes

Sunday, August 26, 2012

Mom still advocating for her son and others with Down syndrome

From the moment Marjorie Sullivan Lee learned her newborn son, Kevin, had Down syndrome she became his advocate.
Dismissing her pediatrician’s suggestion that Kevin be placed in an institution, Lee and her husband, John, decided Kevin would grow up at home with his five older siblings and be part of the community. That wasn’t necessarily the norm in 1960.
Lee battled school officials for years to let Kevin attend a regular school until he became the first person with Down syndrome to graduate from Glenbard East High School in Lombard.
After his graduation, she rejected the idea his only source of employment could be a sheltered workshop. She worked with other parents to start the Parents Alliance Employment Project that, 30 years later, still is finding job opportunities for people with cognitive disabilities.
At age 90, Lee isn’t through. She’s still Kevin’s caregiver and recently published a book, “Bloom Where You Are Planted,” the story of their family and their love for Kevin.
“I have a message to let people realize you can have a good life in spite of being diagnosed with Down syndrome,” Lee said.
She said she believes that message is needed in a society where parents have the option to abort if they learn their child will be born with a disability. She also wants parents who have children with disabilities to realize that, despite the progress, all the problems with providing inclusion aren’t yet solved.
Finally, she emphasizes that people with cognitive disabilities want to be part of the larger community, despite arguments from some quarters they would rather be with their “own kind.”
“I want my son to be part of the normal community, but I don’t believe in working just for my son; I believe in working for other people like him,” Lee said. “I have often rubbed people the wrong way. A lot of people don’t agree with me.”
Lou Brown, professor emeritus of special education at the University of Wisconsin-Madison, said Lee was in the forefront of those working to include people with cognitive disabilities in society when her son was in school.
Madison already was practicing inclusion in its schools, but northern Illinois wasn’t when Lee sought his help and advice.
“She took on the establishment. She was a pioneer. She was tenacious. She was smart,” he said. “She was part of a movement.”

Challenge the norm

When Kevin was born, Lee said she had little personal experience with people with disabilities despite a stint as an administrative assistant at Easter Seals.
“Kevin was a whole new world to me,” she said.
She jumped into that world with both feet. She became part of a group of mothers who contacted other mothers of newborns in the hospital to urge them to take home their Down syndrome babies and love them as their other children. The program led to the founding of the National Association of Down syndrome, with Lee’s husband as its first president.
Lee will have a table displaying her book when the group holds a “Celebrating Down syndrome” conference Sept. 29 in Rosemont.
Her Catholic faith led her to take the stance she did, but even the religious establishment didn’t always get it right, Lee said.
She and her husband rejected a young priest’s offer to give Kevin a private baptism. Instead Lee encouraged a friend to tell everyone in their parish and neighborhood that her newborn son had Down syndrome.
Later, she and her husband worked with a group of other parents to provide religious special education for children who previously were denied access to confirmation and the Holy Eucharist.
Education was an ongoing battle. During Kevin’s formative years in Lombard, he was sent to four or five different schools, all well outside his neighborhood. Only when a federal law that was passed in 1975 emphasized that students should be placed in “the least restrictive environment” were the Lees able to argue successfully — after a two-year appeal process — that their son should attend the neighborhood high school.
Kevin entered Glenbard East High School at age 17 and graduated four years later in 1982.
Being around peers his own age led Kevin to assert more independence, Lee said. He began choosing his own school lunches and pushed the plaid pants his mother had bought for him to the back of the closet. Lee rejoiced in her son’s development.
Kevin also joined the high school wrestling team and, despite a lot of bench warming, rode the team bus to other schools and participated in some demonstration matches.
Lee said school administrators who once resisted her insistence that Kevin be part of the regular student population later became supporters of inclusion.
“Eventually over the years, people suddenly were on the same team as me,” she said.
Kevin’s graduation from high school brought new challenges. A Special Education Parents Alliance she and her husband helped create started focusing on finding employment opportunities for young adults, and eventually changed its name to the Parents Alliance Employment Project.
Lee served as the unpaid program director for six years and will be honored as the keynote speaker when the Lisle-based group celebrates its 30th anniversary in October. Brown said the Parents Alliance Employment Project helped serve as a model for other programs.
“What they did there was influential all over the country,” he said. “She (Lee) doesn’t really know the effect she’s had on other people locally and nationally.”

Views on inclusion

Jane Hodgkinson, the former executive director of Western DuPage Special Recreation Association, served on the Parents Alliance Employment Project board for 16 or 17 years.
She laughs when she recalls how Lee asked her to join. A proponent of full inclusion, Lee considered the special recreation programs WDSRA offered a type of segregation.
“I just want you to know I don’t agree with what you do, but your constituents really like you,” Lee told Hodgkinson.
Hodgkinson said when the fledging organization needed a desk, the Lees might take one out of their own home, and on a few occasions paid the one staff person out of their own pockets.
“Marjorie was absolutely the driving force for the board,” Hodgkinson said.
She and Lee became friends, although they never reached an agreement on their views of inclusion. Hodgkinson said parents should decide when inclusion is appropriate for their children, and sometimes separate activities give children with disabilities opportunities they would not have otherwise.
“In Marjorie’s quest to find Kevin only inclusive activities, it’s held him back,” she said.
But Hodgkinson has never doubted Lee’s love for her son. She admired the Lee family’s togetherness and said she held up Lee as an example to other parents of how to be advocates for their children.
“She is a remarkable woman,” Hodgkinson said. “She is not waiting for anything. She is still going to be an advocate at her age.”

Life today

Lee and Kevin, now 51, now live in a condo near the College of DuPage in Glen Ellyn and have long taken advantage of its programs. Kevin has a transcript covering 30 years of physical education and individualized reading credits.
Jeanne Madoch, a former adjunct instructor at COD, worked with Kevin in a self-structured fitness program for about a dozen years. Madoch said she met Lee and her husband when they were taking a water aerobics class and Lee began talking about Kevin.
“She’s always searching for more things for him to do,” she said. “She’s a go-getter. She has a cause.”
Although not as outgoing as his mother, Kevin clearly has enjoyed the contacts his COD activities have given him, Madoch said.
“He’s funny. He’s got a real sense of humor. He’s quite the character,” she said.
Paid employment didn’t work out for Kevin, but for the past 20 years he has volunteered one day a week shredding documents at a government agency. He’s traveled independently by plane to visit his siblings in other states and shares housekeeping duties with his mother.
While he doesn’t drive, he’s mechanically adept. When the family had a vacation home in Michigan, Kevin drove the small tractor mower. He’s an expert on the remote controls for the TV, DVD and VHS, and has limited skills on the laptop computer.
After Parkinson’s disease required his father to use a wheelchair, Kevin became adept at folding the chair and assembling the lift that allowed the chair to be loaded in the trunk of the car.
Kevin’s father died seven years ago. Lee said the need to be responsible for Kevin has kept her going, but she is realistic about her own mortality. She said her hope is that Kevin will be able to continue to live in their condo with some support after she is gone.
“He is a good man,” she said. “He has a great deal of empathy for people ... He’s accomplished a lot more than we dared to hope.”
Lee’s book, “Bloom Where You Are Planted,” is available from the publisher at and at Bundles of Books & Gifts, 560 Crescent Blvd., Glen Ellyn.

Saturday, August 25, 2012

Train lead singer Pat Monahan surprises fan with Down syndrome

Pat Monahan, lead singer of the band Train, gave one of the group's fans quite a surprise by taking off his shirt, autographing it and handing it to her after singing  "50 Ways To Say Goodbye" on the plaza.

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Healdsburg’s Project Zin Serves Up Support of Down’s Syndrome

from the Daily Blender by Kat Vetrano:
After a while, food and drink events can start to feel like they all run together. While I have nowhere near as much event experience as Jennifer, I’ve been in it long enough to know that sometimes these events can feel a little…repetitive. But when I heard about Project Zin in Healdsburg – near where I grew up – I knew I wanted to attend. Not necessarily because of the location of the event, but because of the profound purpose behind Project Zin.
Driven by the diagnosis of Down’s syndrome in his son, Brady, winemaker  (and University of Oregon graduate) Clay Mauritson of Mauritson Wines, with the help of renowned chef Charlie Palmer, developed the first Project Zin event last year to benefit the Down Syndrome Association North Bay to not only increase support but also in recognition of DSANB – critical to Brady’s development early on – as well as countless other families in the same position. The well-coordinated evening – certainly not the only culinary event to benefit an important cause – was held at the beautiful Hotel Healdsburg and provided information on the struggles of the diagnosis of Down’s, highlighting a number of local children involved with the association.
“It’s great to see how far the event has come,” said Thomas Schmidt, executive chef at John Ash & Co, who cooked for the second year in a row. “Clay wanted to have twenty-one wineries to honor the 21st chromosome that most people with Down syndrome have a duplicate of, and this year he got to achieve that.”
The dishes served were hearty plates of familiar comfort food often highlighting local Painted Hills Beef, all with a Sonoma County touch. A “beef” LT was slathered with a violet-colored zinfandel aioli, while a creamy oyster topped with a zin and bubbles was the ultimate oyster shooter. The wine poured was remarkable, highlighting the jam and spice that make zinfandels from the area so special. While I missed the silent auction part of the evening, I did see the gigantic list of options to bid on from wine packages to get-away weekends, so I know even more proceeds were raised outside of those already earned from the event tickets.
Events like Project Zin remind me why food is attractive to write about in the first place—almost everyone can relate on some level, and when done right, it just makes you feel good. When I think about a friend’s brother who has Down’s, I remember it being impossible not to smile around him, either—his excitement about art, music and life were infectious.  An event like this, with an important cause and stellar food and wine, certainly gave me plenty to smile about, too.

Friday, August 24, 2012

teachers in UAE trained to aid pupils with Down syndrome

Project fosters greater inclusiveness at public schools
The second phase of a project to train teaching assistants to assist pupils with Down’s Syndrome in public schools has been completed.
The project is being implemented by the Emirates Down’s Syndrome Association in collaboration with the British University in Dubai.
Emirates Foundation for Youth Development in Abu Dhabi has pledged to continue its support for the programme, which was implemented by the British University in Dubai and four sub-centres in Al Ain, Ras Al Khaimah, Fujairah and Dibba.
Sonia Al Hashemi, chairperson of the Emirates Down’s Syndrome Association said the training programme focused on female teaching assistants in public schools and follows the directives by the leadership to adopt ways to overcome difficulties facing children with Down’s Syndrome. She added: “The training programme has contributed to the preparation and rehabilitation of a group of female citizens, who are high school graduates to join the labour market and help people with Down’s Syndrome to merge in public schools to learn naturally with their peers.”
Sonia stressed that the cooperation among the Ministries of Education and Social Affairs besides the Zayed Higher Organisation for Humanitarian Care and Special Needs had greatly enabled the association in facilitating the inclusion of those with Down’s Syndrome in public schools, as well as in the exchange of experiences and studies in this respect.
Dr Eman Gaad, dean of Faculty of Education at the British University in Dubai, who heads the team implementing the programme and is an adviser to Unesco, said the project aims to achieve educational objectives while incorporating pupils with Down’s Syndrome in the school community.
The British University in Dubai has completed the implementation of the theoretical aspects of the project in the first and second phases at all centres nationwide.

Thursday, August 23, 2012

Down syndrome testing hits several European markets

from the AFP:
A new prenatal test for Down's syndrome hit the market in Germany and several other European countries Monday, the manufacturer said, amid a controversy over whether it could lead to more abortions.
The product, marketed as PrenaTest and manufactured by German life sciences company LifeCodexx, "is targeted exclusively toward women in their 12th week of pregnancy and beyond who are at an increased risk" of delivering a child with Down's syndrome, the company said in a statement.
The test which involves screening pregnant women's blood samples for the presence of foetal Down's syndrome -- also known as trisomy 21 -- had recently come under fire from rights groups concerned about abortions.
In June, the international federation of Down's syndrome organisations objected to such testing at the European Court of Human Rights.
The federation, grouping 30 associations in 16 countries, said the Strasbourg court should "recognise the human condition and protect the right to life of people with Down's syndrome and those handicapped".
But last month, Switzerland gave the test the green light with a decision by Swissmedic, the national agency for therapeutic products.
Germany's ombudsman for the disabled, Hubert Huppe, for his part called the test "illegal", fearing a "selection of man by Down's Syndrome", but it did not stop the test from going to market.
Down's syndrome is caused by having an extra copy of chromosome 21 and the risk increases as a woman gets older.
LifeCodexx described their procedure as a "risk-free alternative to common invasive examination methods such as amniocentesis".
Invasive procedures currently used for prenatal diagnosis -- in the 16th week of pregnancy -- pose a one percent risk of foetal loss. The diagnosis is therefore only made available to high risk women, which fails to catch all cases.
Besides Germany and Switzerland, the test is also now available in Austria and Liechtenstein.

Wednesday, August 22, 2012

Down Syndrome Foundation condemns South Africa for visa denial preventing WDSC attendance

The Down Syndrome Foundation Nigeria (DSFN) has condemned the decision of the South African High Commission in Nigeria to deny entry visa to seven of the foundation’s delegates for the World Down Syndrome Congress 2012, in Cape Town, South Africa.
The delegates led by the National President of DSFN were to attend the 11th World Down Syndrome Congress in Cape Town, from 14th-18th August 2012.
DSFN made this known at a press conference in Lagos to reveal that the foundation’s delegates which comprised of parents, children and adults with Down syndrome, who were denied the entry visa for allegedly presenting “invalid fake Yellow Cards” during their visa application.
According to the National president of the foundation, Mrs. Rose Mordi, the move by the Department of Home Affairs in the Commission is “vindictive, callous and seen by the foundation as a well thought out act of stigmatization, discrimination against people with Down Syndrome and their careers.”
“This is not only an insult to our foundation but also to the Federal Government of Nigeria” the foundation stated.
Regretting the denial, the foundation noted that “what made the congress special to the foundation was that the foundation is the only African organization to be presented an international award in recognition for taking care of people with Down Syndrome by the Down Syndrome International (DSi) which was to be presented at the congress.”
The National President was also billed to give an address alongside the President of the South Africa Down Syndrome during the event that has all Down Syndrome organizations from all over the world in attendance.
The foundation noted that despite submitting its visa application on time and making all necessary arrangements such as hotel accommodation, congress registration and so on in preparation for the trip, the South African High Commission still denied them the visa.
It noted that the move is “not only suspicious and totally unacceptable but smacks of arrogant disregard for charity organizations working hard to make a difference in the lives of people living with challenges, and an insult to our Government.”
“With their action, the South African High Commission has denied people with Down Syndrome from Nigeria an opportunity to interact with their counterparts all over the world in an event that is happening on an African soil which is a BIG shame to the officials that took this heart breaking decision considering the appeal President Jacob Zuma made to South Africans concerning people with Down Syndrome in his March 21st address to the nation in 2011.”
Defending the source of the yellow cards submitted, the foundation stated that “the yellow cards submitted by the delegates as a prerequisite requirement were obtained from the Local government councils that have the constitutional right to issue such vaccinations and all the delegates have been vaccinated as many of them have traveled outside Nigeria with the Yellow cards and were not subjected to stigmatisations as was shown by the South African High Commission.”
The DSFN has therefore called on the South African High Commission to “specify on how the Yellow Cards were invalid as all the certificates still has dates of vaccination and other information are valid.”
The foundation affirmed that, despite the discouraging impact of this move by the Down Syndrome Foundation Nigeria, it will “not be shaken”, adding that “we will not remove our focus from taking care of people with Down Syndrome in our country and the world over.”

Tuesday, August 21, 2012

Girl with Down syndrome arrested in Pakistan for burning verses of the Koran

ISLAMABAD: Pakistan’s president on Monday called on officials to explain the arrest on blasphemy charges of a Christian girl with Down’s Syndrome who allegedly burnt pages inscribed with verses from the Quran.
There is a growing debate about religious intolerance in Pakistan, where strict anti-blasphemy laws make defaming Islam or desecrating the Quran punishable by death.
Police said the girl, Rifta, was arrested in a Christian slum of the capital last Thursday and remanded in custody for 14 days after a furious Muslim mob demanded she be punished.
A police official, speaking to AFP on condition of anonymity because of the sensitivity of the case, said the girl was in her teens. Activists say she is 11 years old.
President Asif Ali Zardari took “serious note” of the arrest and called on the interior ministry to submit a report on the case, state media said.
His government was heavily criticised in the West for refusing to reform the anti-blasphemy law, despite the assassinations of a leading politician and a Christian cabinet minister in 2011.
Some reports suggested the girl had been burning papers collected from the rubbish for cooking when someone entered her house and accused the family of burning pages inscribed with verses from the Quran.
Human rights activists say the law is often used to settle petty disputes.
Muslim anger over the alleged incident forced Christians to flee the Mehrabad slum, home to hundreds of Christians 20 minutes’ drive from Western embassies.
“These Christians had sought shelter with their relatives in other parts of the city but now they are gradually returning to Mehrabad,” a senior official of All Pakistan Minorities Alliance, Tahir Naveed Chaudhry, told AFP.
He said the girl had Down’s Syndrome — a condition which causes various degrees of learning difficulties — and disputed the age given by police.
“She was just 11 to 12 years old,” he said, adding his organisation wanted the hugely sensitive case resolved “amicably”.
The Women’s Action Forum (WAF), a leading Pakistani organisation fighting for the rights of women, condemned Riftaa’s arrest.
Spokeswoman Tahira Abdullah demanded her immediate release and expressed outrage at the “total inhumanity” of the men who lodged the case with police.
Police should have dealt with the case under the Juvenile Justice System, she said, accusing police of not allowing lawyers or civil society representatives to visit the girl.
Punjab governor Salman Taseer was assassinated in January 2011 and minorities minister Shahbaz Bhatti two months later for their opposition to the blasphemy law.
They had taken up the plight of a Christian mother sentenced to death for blasphemy in late 2010. She remains in prison.
Last month, a Pakistani mob snatched a mentally unstable man from a village police station and beat him to death in central Punjab province after he allegedly burned pages from a Quran.


more from Fox News:
But some police officials doubt reports that Rimsha burned parts of the Koran.
Qasim Niazi said when the girl was brought to the police station she had a shopping bag that contained various religious and Arabic-language papers that had been partly burned, but no Koran.
Another police officer said the matter would likely be dropped once the investigation is completed and the atmosphere is defused, saying there was "nothing much to the case." He did not want to be identified due to the sensitivity of the case.

Read more:


Facebook response from GDSF, NDSS, DSEi, IDSC, and NDSC:
The Global Down Syndrome Foundation, the National Down Syndrome Society, Down Syndrome Education International and the International Down Syndrome Coalition have joined together in shared concern over the fate of Rifta Masih, a young Pakistani girl reported to have Down syndrome, who allegedly was jailed and faces life-threatening implications.
People with Down syndrome and other intellectual disabilities are a vulnerable population. Although early intervention and inclusion in some nations has meant great gains for many, there are still people with intellectual disabilities who have difficulty processing information or fully understanding the consequences of their actions.
We hope and expect that people from all countries and cultures, including those in the United States, will take this into account in terms of how people with Down syndrome and other intellectual disabilities are handled in police- and security-related matters. We strongly encourage the Pakistani police to ensure the young girl's safety and to allow family members and others who are known and trusted by the girl to stay with her to the extent that detention is necessary for her own protection.
It is very difficult for most people with intellectual disabilities to be taken out of their routine, and sometimes this may trigger agitated or uncontrollable behavior. We hope that this young girl will be able to return to the routine where she is safe and happy. We join others in urging restraint and compassion in this situation.

Monday, August 20, 2012

boy with Down syndrome able to communicate like never before, thanks to iPad apps

by Meg Baker from Fox News:
Communication is an essential part of everyday life—but for those who are non-verbal, to be given the ability to speak is life changing. Breakthrough technology like touch screen apps are now giving stroke victims, individuals with autism and children like Enrique Mendez who has Down syndrome, a voice.
Enrique, 9, of New Jersey, primarily uses the app Proloquo2Go app to create speech by clicking on text and symbols.
“He definitely has a personality and we never knew it until this app, that he actually can have full conversations and dominate a conversation as well,” Diana Mendez, Enrique’s mother, told
The app’s developer, David Niemeijer, said he did not fully realize the impact the app would have on lives when he first came up with the idea, but meeting Enrique and his family exceeded his expectations.
“He [Enrique] is able to have more control of his life, is able to do more things that other kids do and get his message across and so he is much more empowered in a way,” Niemeijer said.
Proloquo2Go provides endless text-to-speech voices with a customizable library of more than 14,000 pictures and symbols, which users can configure from 9 to 36 buttons per page. The app comes with two pre-programmed vocabs to choose from, Core Word—most frequently used words in English, and Basic Communication—for new communicators depending on the personal needs and preferences of different users.
Enrique’s mom previously used other methods like sign language to communicate with her son, but said that limited the number of people he could communicate with.
“Now he can communicate with everyone,” she added.
“I want a pretzel,” Enrique said during the interview.
Another app that can be used as a  communication device and teaching tool is See.Touch.Learn, which replaces traditional picture cards that have been used for years in educating children with special needs, with speech delays, pre-schoolers, individuals who suffered a stroke and more.
“It allows the teacher to create lessons using those pictures, the same way they used to do with traditional picture books, or  index cards,”  Jim McClafferty, developer and President of Brain Parade, LLC told
An example of what an interactive lesson might look like is a grouping of pictures that show faces both happy and sad. The exercise asks the user to choose the “happy” face.
“This would traditionally be done with the cards and the child would pick the card,” McClafferty said. A bell sounds when the user has chosen the correct answer.
See.Touch.Learn is used to not only teach new words and concepts, but to foster self-expression. McClafferty said the power of the app is in the community using it.
He added, “we’ve got over 200,000 users, in 104 countries right now that use the application, and we are going to let them share images,” creating an unlimited library.
Mendez said she is thankful that now Enrique is able to be a "normal" kid and interact with friends.
“I want a pretzel,” Enrique repeated.
Mendez smiled at her son and said, “Just like a typical child that will not stop asking you for what he wants until he gets what he wants . . . like a typical 9-year-old.”
“Thank you, gracias,” Enrique replied.
“I’m so glad you said that because I was just about to say your manners are unbelievable,” Mendez told her son.
Another highlight of incorporating the technology into their lives is that the family has learned so much about Enrique, like his favorite color and that he has a very silly side.
“Thank you, David for giving me a voice,” the iPad sounded, and the Mendez family cheered.
Download Proloquo2Go: Apple iTunes. 
Mobilewalla score: out of 100.
Download See.Touch.Learn.: Apple iTunes.
Mobilewalla score: out of 100.

Read more:

Sunday, August 19, 2012

Social media effort to help a Justin Bieber fan with a dream

by Haley Frances from
Like millions of other kids, Samantha Basile idolizes teen singing sensation Justin Bieber.
With posters plastered on the walls of her bedroom in her family's Phoenix area home, and a big box of Bieber knickknacks including hats, T-shirts, and concert DVD's, it's clear Basile has "Bieber Fever."
But unlike most Bieber fans, the 16 year-old senior at Pinnacle High School also has Down syndrome. And each and every day when Samantha gets home from school she sings and dances along to her favorite Justin Bieber songs.
12 News staffers learned about a video that Samantha and her sister, 15 year-old Kasey Basile, posted on YouTube.
Kasey and her friends posted a 3 1/2-minute video hoping to catch the superstar's attention, and let him know that Samantha, who has never even been to a Justin Bieber concert, is a devoted fan.
"She said if she saw him she would pass out", Kasey explained.
The girls' mom, Linda Calleja, teared up while explaining how important this is to her daughter. Calleja says that Samantha is selfless, and never asks for anything unless it's something with a logo or picture of her favorite superstar.
In the video the girls created, Samantha holds up note cards for Bieber to read, and describes her two wishes, to be a normal teenager and to meet Justin Bieber.
Bieber's North American Tour rolls into Glendale's Arena on Saturday, Sept. 29. The family is hoping that Sam's second wish can come true.

Saturday, August 18, 2012

"Let Us In - I Want To Learn" video


Our thanks to the following for their outstanding video contributions:

Jonathan Center - Albania
Asociación Síndrome de Down de la República Argentina (ASDRA) - Argentina
Down Syndrome New South Wales - Australia
Down-Syndrom Österreich - Austria
Aywiña Sindrome de Down - Bolivia
Život Sa Down Syndromom - Bosnia & Herzegovina
Instituto MetaSocial - Brazil
Association of Parents of Children with Down Syndrome - Bulgaria
Kyle Sumrow - American School of Yaoundé - Cameroon
Canadian Down Syndrome Society - Canada
Fundación Síndrome de Down del Caribe - Colombia
Down Syndrom Centar Pula - Croatia
DownSyndrom CZ - Czech Republic
Asociacion Ecuatoriana Sindrome de Down - Ecuador
Jevgenia Jepifanova - Estonia
Downiaiset - Suomen Downin Syndrooma ry. - Finland
Trisomie 21 France - France
Association of Professionals and Parents of Children with Down Syndrome - Georgia
Deutsches Down-Syndrom InfoCenter - Germany
The Disablement Foundation of Ghana - Ghana
Down Syndrome Association of Greece - Greece
Asociacion Guatemalteca para el Síndrome de Down - Guatemala
Hong Kong Down Syndrome Association - Hong Kong
Angyalszív Down Alapítvány - Hungary
Down's Syndrome Care Association (DSCA) - India
Ikatan Sindroma Down Indonesia (ISDI) - Indonesia
Down Syndrome Association of Iraq (Hiba Centre for Down Syndrome) - Iraq
Down Syndrome Ireland - Ireland
Associazione Italiana Persone Down (AIPD) - Italy
Werathah Forum - Jordan
Down Syndrome Kosova - Kosovo
Yousef Ahmad Almuhanna - Kuwait
Lebanese Down Syndrome Association - Lebanon
Sinolicka - Macedonia
Kiwanis Down Syndrome Foundation - Malaysia
Mrs Gakou Aissata Diop - Mali
Down Syndrome Association Malta - Malta
Down Syndrome Association of Mauritius - Mauritius
Fundación John Langdon Down - Mexico
Oshana Down syndrome Group - Namibia - Hannah Kambowe
Down's Syndrome Association of Nepal - Nepal
New Zealand Down Syndrome Association - New Zealand
Down Syndrome Foundation Nigeria - Nigeria
Pakistan Down Syndrome Association (PDSA) - Pakistan
Sociedad Peruana de Sindrome Down - Peru - Poland
Associaçāo Portuguesa de Portadores de Trissomia 21 (APPT 21) - Portugal
Downside Up - Russia
Werathah Forum - Saudi Arabia
Down Syndrome Association Singapore - Singapore
Sekcija za Downov sindrom, Sožitje Ljubljana - Slovenia
Down Syndrome South Africa - South Africa
Asociación síndrome de Down de las Islas Baleares (ASNIMO) - Spain
Ranjith WM. - Sri Lanka
Sudan Center for Down Syndrome - Sudan
Svenska Downforeningen - Sweden
Insieme 21 - Switzerland
Penny Aika Pettit Down Syndrome Foundation - Tanzania
Good Child Foundation - Thailand
Association des Parents et Amis des Personnes Encéphalopathes (APAPE) - Togo
Down Türkiye Down Sendromu Derneği - Turkey
UAE Down Syndrome Association - United Arab Emirates
Down’s Syndrome Association - United Kingdom
Ukrainian Down Syndrome Organization - Ukraine
National Down Syndrome Society - USA
La Asociación Venezolana para el síndrome de Down (AVESID) - Venezuela
Zanzibar Association of Down Syndrome (ZADOC) - Zanzibar
Zimbabwe Down Syndrome Association - Zimbabwe

And very special thanks for the generous and continued sponsorship of:

Down’s Syndrome Association - United Kingdom and,
Down’s Syndrome Federation of India - India

without which DSi's global WDSD initiatives would not be possible.