Thursday, May 29, 2014

Clothing line in boutiqe dons 9-year-old's artwork, raises awareness

Tana and Jim Ford might not have learned about their son's special talent, had it not been for a school project.
Mack, who has Down syndrome, was in first grade two years ago in the South Fayette Township School District when he and classmates were asked to create self-portraits to be put on tiles and used in the district's new intermediate school.
“When Mack did his, they were just in awe,” Tana Ford said.
His art teacher sent home a note about his self-portrait and its amazing detail — spiky brown hair, large brown eyes and somewhat intricate ears.
Mack, now 9, spends at least an hour almost every day on his art. His drawings are featured on shirts that his mother sells in her Tana's Boutique in Sewickley.
Tana Ford said her son started with black marker drawings on white paper, and has evolved into abstract works of vibrant color on canvas. Many are what you'd expect from a young child, but about two out of every 50 are really special, she said.
“All of the sudden, you'd look at something and are like, ‘This is really cool. There's just something about it,'” she said.
The first three drawings that caught the attention of Mack's parents were ones he named “Scream,” “Mom” (a portrait of his interpretation of his mother) and his favorite, “Icky Bird.” All three are drawn in one continuous motion in black marker.

Wednesday, May 28, 2014

The Market For DNA-Sequencing-Based Down Syndrome Tests Could Exceed $6 Billion

...The New England Journal of Medicine published a study showing that a new, DNA-sequencing based blood test provides a dramatic improvement in accuracy at screening for Down syndrome and a second, deadly disorder. That could open up a $6 billion market to the biotechnology companies that are already marketing these tests.
Each year in the U.S. there are 6.6 million pregnancies and 4 million births, according the Centers for Disease Control & Prevention. The list prices of the tests, which are sold by four different companies, range from $700 to $2500. Assuming that pricing settles in the middle of that range and that there are 5 million women who choose to have the test, that would be a $8 billion market.
But give that number a haircut. “I have to imagine pricing could come down more aggressively if guidelines expanded,” says Douglas Schenkel, an analyst at Cowen & Co. Not every pregnant woman will ever get the test. But he still argues that the market for these tests could increase six-fold from its current size of about $1 billion. Isaac Ro, an analyst at Goldman Sachs, offered similar estimates in a note to clients.
Such a market expansion could be important to all of the companies that make the tests, including Ariosa, which makes the lowest price test, Natera, and Sequenom SQNM 0%. But the biggest winner could be Illumina, the San Diego maker of DNA sequencing gear that funded the trial and that purchased Verinata, a fourth maker of the new tests, for $350 million last year.
Illumina says it believes Verinata has strong intellectual property position in this booming new market. Beyond that, though, all four manufacturers run their tests on Illumina’s DNA sequencing machines, meaning the company wins no matter what. Francis DeSouza, Illumina’s president, said in an interview that, if anything, he expects to spend less on marketing Verinata and that the company is taking care for there to be an even playing field for the tests. It prices its test in the mid-range of the market, at a $1,500 list price.
Illumina also says that it doesn’t expect a price war, because the market expansion will be dependent on medical societies writing guidelines that endorse the new test. Right now the American College of Obstetricians and Gynecologists recommends the DNA-based tests only for mothers at high risk, including those over 35.
But the NEJM paper makes a strong argument for expanding that recommendation. Right now it’s recommended that all pregnant women be offered a pair of tests – a blood test and an ultrasound to look for fluid at the base of the fetus’ neck – to screen for three disorders caused when the baby has an extra copy of one of the 46 chromosome bundles that contain the human genetic code. There are three such disorders that occur commonly: trisomy 21, or Down syndrome, is the most common, causing diminished intellectual ability and slower growth; trisomies 18 and 13 are less common, but are often fatal for the infant.
Current screening tests yield a large number of false positives, so they must be followed up with an invasive test that samples cells from the fetus. One such test, chorionic villus sampling, has a miscarriage rate of 1 in 200; the other, amniocentesis, causes miscarriages 1 out of every 600 times.
These invasive tests would still be needed to confirm positives from the DNA tests, but they’d be used in women whose fetuses don’t have Down or other trisomies far less often. The NEJM study gave the old screening tests and the new DNA-based test to 1,914 pregnant women and followed them until the baby was born. For Down Syndrome, the new test gave just 6 false positives compared to 69 for the old screening tests. For trisomy 13, there were 3 false positives with DNA sequencing compared to 11 with the traditional number. For trisomy 13, the numbers were 1 and 6.
Assuming 5 million women are tested each year, that would mean 245,000 would be spared an invasive test, and 358 miscarriages might be prevented. Even at a higher cost, that could be hard for insurance companies to say no to. Some experts, including Illumina, expect that more studies will be needed to change the guidelines.
How does the new test work? Basically, by counting. Because some of the fetus’ cells circulate in the mother’s blood, researchers can sequence DNA and see if genes from any chromosomes appear too often. For a more complete description, check out the video embedded from Steve Quake at Stanford, who co-invented Verinata’s technology.
Not everyone is sure that the new technology, known as non-invasive prenatal testing, is an unmixed blessing. Hank Greely, a professor of law at Stanford Law School who has written extensively on genetic issues, says that the new test is “more reason to think NIPT will largely take over Down screening.” But he warns that these same methods might lead to tests for more complicated tests. “If, say, 70% of American pregnancies received broad genetic screening, the next generation would look different – some will say for better, some for worse.”

Tuesday, May 27, 2014

7 Awesome Life Lessons My Son With Down Syndrome Taught Me

by John Simmons from the Huffington Post:
Amy and I had three biological sons when we adopted a 1-month-old little boy with Down syndrome and started taking lessons from him. Jack was fragile. He would require open heart surgery by the time he was 6-months-old.
Jack contracted postoperative pneumonia and it was looking like he might become a part of the 15 percent of children at that time, who didn't make it home after surgeries like his. I still remember his older brothers, aged 6 to 2, standing around that enormous hospital bed looking longingly at a tiny sibling with more wires and tubes than they could count going from his body to the intimidating flashing, beeping and humming medical equipment. Any of us would have done anything to make him well, but there was nothing we could do. As I recalled our five months together, I realized that there were no regrets. That was the first lesson Jack taught me. When death causes a separation between me and anyone I love, I want to have that same feeling. I want to have nothing amiss. If anything has been out of order, I want to have repaired it to the best of my ability.
The next time my son took me to school, he wasn't even in school, yet. Jack didn't walk until he was 3. He potty trained when he was 4. My son didn't progress quickly, but he did progress. If I tried to measure him against his siblings and the rate that they learned, there could only be disappointment. But when we celebrated Jack's accomplishments for what they were to him, and measured them against his own challenges, advancement for him was at least as impressive as it was for any of our other children. I had no idea how important this lesson was until we adopted several more children and eventually learned that some of them suffered from attachment disorders. Jack 101 taught me to allow my children with attachment difficulties the time that they needed to progress. That course also gave me the understanding, that for these children, accomplishments which might have seemed slight to others, could be celebrated by my family as the monuments they truly were.

Monday, May 26, 2014

Book: My Sister is Special, My Sister Has Down Syndrome

Marta Schmidt-Mendez - My Sister is Special, My Sister Has Down Syndrome (Special Needs) 
When a child is born with a disability, parents mourn what could have been. They may be in shock and grieving, needing time to adjust. When there are other children in the family, parents may be too involved in their own grief to understand the impact that this unexpected occurrence is having on the other children. Children see the adults grieving and stressed and may not understand what is happening. They too may have been preparing for the birth of their sibling and what may be taking place is not what they expected either. It is important for adults to remember that children need reassurance, an explanation and to know that they are loved and included. This book is written by a Child Development Specialist to assist families in these situations.

Sunday, May 25, 2014

Kids will suffer because of medical card cuts

by Pat Flanagan from the Irish Mirrior:
Head of Down Syndrome Ireland backs our campaign to change law for children's health
The law must be changed or all children with Down Syndrome will not receive a medical card, it was claimed on Wednesday.
The head of Down Syndrome Ireland said the practice of awarding cards on the basis of a child’s financial situation – not the state of their health – must stop.
The Irish Mirror is campaigning to have the 1970 Act changed to allow all children with the condition to receive a medical card.
At present, even youngsters who are severely ill cannot get a card if their parents are earning as little as €5 over the cut-off limit.
Down Syndrome Ireland boss Pat Clarke said HSE officials, who have asked if children with the condition have got better, are totally out of touch.
He insisted: “The law needs to be changed and we’ve been asking for this for some time.
“Many, many years ago there were the county medical officer in each region who looked at each individual case and would know these individual people and be able to assess the medical condition all these children with Down Syndrome had.

Saturday, May 24, 2014

Alleged victim's vulnerability challenged by defence

by Sasha Borissenko from The Nelson Mail:
A woman with Down syndrome who says her carer grabbed her head and pushed her face close to an element is not a vulnerable adult, a defence lawyer says.
The carer, Deborah Michelle Waugh, is on trial in the Nelson District Court.
She denies a charge of ill-treating a vulnerable adult.
Defence lawyer Brett Daniell-Smith yesterday argued that Waugh did not mistreat the 25-year-old complainant.
He told the court that although Waugh was a gruff woman, she had a kind and gentle heart.
The Crown alleges that Waugh, 60, ruled the house where the woman lived through fear, creating an unhealthy and unpleasant atmosphere.
Staff working under her raised concerns but a complaint file went missing.
Daniell-Smith and Crown prosecutor Jackson Webber gave their closing statements yesterday.
Waugh worked for Intellectual Disabilities Empowerment in Action (Idea) as a support worker and facilitator at a Collingwood St home for people with intellectual disabilities for six years.
The alleged events in question occurred between October 31 and December 25, 2012, but were only brought to light in April 2013.
The Crown alleges that any complaints were covered up by Waugh's manager and friend.
The alleged incidents only came to light after the manager and friend left the organisation.
In his closing address, Daniell-Smith said that in his view, the complainant did not fit the definition of "vulnerable adult".

Friday, May 23, 2014

Milford first responders get autism training

MILFORD -- Jason Dorval showed a room full of Milford firefighters, police officers and paramedics a photo of his 10-year-old son, Connor, who has both Down syndrome and autism.
Dorval, a firefighter and paramedic in Whately, Mass., was making a point about visible disabilities versus the invisible. Connor's Down syndrome is easy to identify, Dorval said, because it carries certain physical characteristics, such as an upward slant to the eyes and small stature.
"If you saw Connor, you'd recognize the disability right away," he said.
Autism, however, doesn't carry such obvious physical characteristics. That is why Dorval is visiting police and fire departments throughout the country as part of the Massachusetts-based Autism and Law Enforcement Coalition, founded in 2003. The coalition helps train first responders to recognize people with autism and treat them accordingly.
"It's important to recognize a person with autism so they're not misconceived as being noncompliant with fire and police orders, (or) thought to be injured or possibly intoxicated," Dorval said.

Thursday, May 22, 2014

Film about Ethan Saylor case gets a screening

FREDERICK, Md. — A documentary filmmaker is providing a preview in Frederick of his movie about the death in custody of a man with Down syndrome.
The Arc of Frederick County says Edward Rhodes is screening a short-form, rough cut of the film Wednesday night at the organization’s office.
Rhodes is from Martinsburg, West Virginia.
The project stems from the death in January 2013 of Robert Ethan Saylor, a 26-year-old man with Down syndrome from New Market.
Saylor suffocated to death as three Frederick County sheriff’s deputies, moonlighting as mall security officers, tried to remove him from a Frederick movie theater because he hadn’t purchased a ticket for a second viewing of the movie, “Zero Dark Thirty.”
A Frederick County grand jury declined to indict the deputies.

Wednesday, May 21, 2014

Williamstown Father to Speak at Advocacy Day in Boston

BOSTON — Williamstown resident Stephen Narey will be a featured speaker at the first MDSC Down Syndrome Advocacy Day at the State House on Tuesday, May 27.

The event is hosted by the Massachusetts Down Syndrome Congress and aims to encourage lawmakers to support critical policies and funding to ensure that all people with Down syndrome have opportunities to lead meaningful fulfilling lives in the community. At the top of the list is the National Background Check Bill (H.1674), a piece of legislation that would finally close a gaping loophole that puts people with intellectual and developmental disabilities at risk of abuse. Under current law, those hired to work with people with developmental disabilities are required to have a state criminal background check, but not a national check.

Hundreds of members of the Down syndrome community will gather for a luncheon reception followed by individual meetings with their legislators. They will walk the halls to share their stories and lobby our legislators to pass key legislation.

Narey, an attorney, is chairman of the MDSC Board of Directors and father to Cole, who has Down syndrome.

Speaker of the House Robert DeLeo of Winthrop will be given the MDSC’s first “Legislative Champion of the Year Award.” Other invited guests include Senate President Therese Murray, Boston Mayor Marty Walsh (primary sponsor of National Background Check Bill when he was a state rep.), EOHHS Assistant Secretary Rosalie Edes, DDS Commissioner Elin Howe, State Rep. Tom Sannicandro, and others. FOX25 weekend news anchor Heather Hegedus will emcee the event. Registration is free at

Tuesday, May 20, 2014

Special-needs students perform in high school talent show

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by Eric Yutzy from Local 10:
They may be out of tune, but these best friends are not out of place.
Howard Rouse and Matthew Fernandez are in Best Buddies, a club at Southwest Miami High School that connects students with and without special needs.
Howard has Down Syndrome. Matthew has Howard, and high school hallways are always better with an ally.
"When you go into the cafeteria you see people with Down syndrome and disabilities sitting with jocks and cheerleaders," said Fernandez. "It's a beautiful sight."

Monday, May 19, 2014

Mother says state program gives comfort in raising child with Down syndrome

by Victor R. Martinez from The El Paso Times:
Gaby Escobar knows first hand how important the It-Takes-a-Village concept is.
In this case, "the village" consists of speech/language, occupational and physical therapists from Early Childhood Intervention — or ECI.
Escobar's two-year-old daughter Analuisa, who was born with Down syndrome, has been a part of the program since she was a few months old.
"I could not imagine raising her without this help," she said. "I'm very proud of the work all the team — the therapist, the family and Analuisa — have put in. I am very grateful for all the help and love that they have shown us. They have become our family."
ECI is a statewide program for families with children, birth to 3-years-old, with disabilities and developmental delays.
ECI supports families to help their children reach their potential through developmental services. Services are provided by a variety of local agencies and organizations across Texas.
"She has had a speech and language pathologist since she was born," Escobar said. "She can say about 17 words and 27 more in sign language. Her first words where 'papa.' She's in love with her papa."

Sunday, May 18, 2014

Kuwaiti ship stops over in Oman to spread message on Down Syndrome

from MENAFN - Muscat Daily:
Kuwaiti Ship Journey of Hope, which is travelling across the world to spread the message on Down Syndrome, autism and learning difficulties, has reached Oman.
Passing through the Strait of Hormuz, the ship reached Musandam on Monday and arrived at Shangri-La's Barr al Jissah Resort & Spa marina at 5pm on Tuesday. It will be docked there until Thursday before heading to Duqm and then to Dhofar on May 17. The ship will leave the sultanate's waters on May 19.
Yousuf Abdulhameed al Jassem, director general, Journey of Hope, said there are 16 travellers on board the ship, including nine crew members. ''Travellers also include two parents with their children with Down Syndrome and two members of a media crew who are documenting the whole trip. The ship will be passing through the waters of 20 countries, visiting 39 ports.

Saturday, May 17, 2014

WKU Speech Language Pathologist Receives Starfish Award

BOWLING GREEN, Ky. (5/14/14) — Caroline Alexander Hudson, assistant director of Western Kentucky University’s Communication Disorders Clinic, received the Starfish Award from the Down Syndrome of South Central Kentucky May 8.
The Starfish Award is Down Syndrome of South Central Kentucky’s Educator of the Year honor and is given to a person who has worked to create positive change for individuals who have a diagnosis of Down syndrome.
Hudson, a WKU graduate and a speech language pathologist, created a social communication group that meets two times per week to work with young adults who have a diagnosis of Down syndrome. The group is a partnership between WKU’s CDC in the Suzanne Vitale Clinical Education Complex and The Buddy House.

Friday, May 16, 2014

Sweethearts with Down syndrome to wed 30 years after meeting

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by Eun Kyung Kim from Today News:
Austin Underwood says he has loved his fiancée, Jessica Smith, since they were 4 years old, when their mothers met at a support group for children with Down syndrome.
Thirty years later, the Dallas couple will finally tie the knot.
“I want to marry her because I love her. She's my very own best friend,” Austin told NBC’s Maria Shriver.
The couple have grown from being playmates to prom dates and, next month, husband and wife.
“All I see is a big sun, or a god,” Jessica said of her sweetheart. “A sun — and the moon!”
Their story reflects not only their love, but the determination by their mothers to give their children normal lives.
“'Two people with Down syndrome, they're really getting married?' You know, there’s a little bit of stigma still there,” said Austin’s mother, Jan Underwood. “And this is kind of another chip away of removing that stigma.”

Thursday, May 15, 2014

Glee Actress Has New Role as Ambassador

Los Angeles Local News | FOX 11 LA KTTV

You know her as William McKinley High’s loud-mouth “Cherrio” Becky Johnson on the FOX television show “Glee”. Now, 24-year-old Lauren Potter has a new role, one she is extremely proud of – Special Ambassador to the 2015 Special Olympics World Games in Los Angeles. Lauren, who has Down Syndrome, has been involved with the Special Olympics since high school, taking part in volleyball and baseball. She says that being one of the faces of the games is more than just a job, it’s a mission to give people with disabilities a voice. “I’m so proud of myself and these athletes”, says Lauren. Her mother, Robin, tells us that “Glee” also has given a platform to people with disabilities. Lauren says her role helps her make a difference to other people with Down Syndrome. They both agree that the Special Olympics helps give “power to the athletes, giving them a chance to be champions and to be stars for that moment”.

Wednesday, May 14, 2014

Rockin’ for Downs charity concert at the Rock and Roll Hall of Fame

by Eileen Di Rocco from
Next Tuesday, May 20, there will be a Rockin’ for Downs charity concert to raise awareness for Down syndrome at the Rock and Roll Hall of Fame and Museum in Cleveland. One hundred percent of all proceeds will be donated to The Up Side of Downs organization.
We realize that is a long way from Vegas and our usual Around Town beat, but we have a special interest in this concert as it is happening due to the hard work and dedication of our great-niece Maisie Hanley, a sophomore at Shaker Heights High School.
Things have changed since we were a sophomore. Back then a simple bake sale or car wash would have sufficed. However, Maisie is participating in the International Baccalaureate program at the school and is one of a select number of students asked to complete a project combining academic success with issues in the community and their own personal passion. That requires more than a few homemade cookies.
And so, Maisie decided to organize this concert. She persuaded the Rock Hall to donate their venue, scoured the surrounding area for suitable family-friendly entertainment, asking them to perform free of charge, and put together a publicity campaign. There will also be a silent auction. (To say we are proud of her is an understatement. Our buttons are busting!)

Tuesday, May 13, 2014

Delaware and Maryland join Massachusetts and Kentucky in enacting laws to provide information with a Down syndrome test result

Last week, Governor O’Malley of Maryland and then Governor Markell of Delaware each signed laws requiring that their state agencies provide accurate, up-to-date information about Down syndrome for parents receiving a test result. They join Massachusetts (2012) and Kentucky (2013) in passing such legislation.

Delaware joins Massachusetts and Kentucky exactly in what is required, passing in substance the exact same laws as passed in those states. So, now in Delaware, Massachusetts, and Kentucky anyone delivering a test result for Down syndrome to parents is required to provide accurate, up-to-date written information and contact information to local Down syndrome support organizations. Delaware hopefully will further join Massachusetts and Kentucky in identifying the same written information and resources to further standardize the way prenatal testing and postnatal diagnoses are administered.

Maryland also passed a law providing information. Compelling testimony was taken during the hearings on the pending legislation:
When Heather Sachs’ daughter was born with Down Syndrome eight years ago, she wasn’t given helpful information or the names of parent groups offering advice and support.
Instead, Sachs tells Maryland lawmakers, she was simply handed a pamphlet, entitled “So You’ve Had a Mongoloid: Now What?”
On the audio of the Senate Finance Committee hearing where she testified, the gasps from lawmakers and attendees are audible.

Social media boosts Down's Syndrome fundraising football event

by Pete Hughes from Oxford Mail:
Social media helped make this year’s Down’s Syndrome Oxford football tournament the most successful ever.
Organiser Niki Archer trebled the number of teams from seven to 21 and raised more than £1,000, thanks to her use of Facebook.
The 31-year-old from Wootton, whose four-year-old Archie has Down’s, said she was amazed by how successful Sunday’s tournament at Milton United’s ground near Didcot was. She said: “It was a lot of work and very tiring towards the end, but when I came home and turned on my phone, I found so many messages of thanks saying it was a wonderful day.
“The amount of money and awareness we’ve raised for a small charity is brilliant.”

Monday, May 12, 2014

Student with Down syndrome crowned prom king

from KARE 11 NBC:
BROOKLYN PARK, Minn. -- Prom is a night to remember for many students, and that was certainly the case for the those at Park Center High School.
Students celebrated as Austin Guertin, who has Down Syndrom, was crowned prom king.
Austin's date Jessica said she had a great time at the dance and was happy to go to prom with a great person.

Sunday, May 11, 2014

Sayville's Meg LaBelle, with Down syndrome, scores goal in lacrosse game

by Stephen Haynes from Newsday:
Farmingdale goalie Olivia Kirk was brought to tears, so moved by a goal she allowed that meant as much as any she had ever prevented.
"That was a great moment; something special," said the senior, one of several players on either sideline overcome with emotion. "How often does something like this happen?"
Meghan LaBelle, a Sayville junior with Down syndrome, scored against Farmingdale with 4.9 seconds remaining in Friday night's game. She carried the ball from midfield, with the help of Sayville's Julianne Johnston, drove up the right wing and fired from close range.
Cameras flashed, video rolled, the benches roared and many in attendance became choked up. LaBelle just beamed, having just realized one of her fantasies.
"Playing lacrosse is my dream," she said, still giddy. "It's my favorite sport. I was excited [but] I wasn't nervous at all. I got to play with my best friend, Jules."
That would be Johnston, who has known LaBelle since kindergarten.

Saturday, May 10, 2014

Leona Lewis: Abortion of Babies Down Syndrome ‘Hurts My Heart’

by Lauretta Brown from CNS News:
( – Upon learning that 90% of babies diagnosed with Down Syndrome are aborted, singer/songwriter Leona Lewis said it was “incredibly sad” and “hurts my heart a bit.”
Lewis, a Brit who shot to fame and a successful musical career after winning the X Factor in 2006, made her remarks on Wednesday at the Global Down Syndrome Foundation Gala at the Renaissance Mayflower Hotel in Washington, D.C.
At the event, asked Lewis,  “What do you think of the statistic that nine out of ten babies diagnosed with Down Syndrome are aborted?”
Lewis said, “I think that’s so sad. I think that’s incredibly, incredibly sad and, yeah, it hurts my heart a bit.”
The high rate of abortion after a diagnosis of Down Syndrome was reported in the New York Times as early as 2007 and has been confirmed by several different studies.
“About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion,” reported The Times.

Friday, May 9, 2014

Romanian man calls Canada's immigration policy outdated

Radu Bogdan wants to bring his family to N.B. but his son, who has Down Syndrome, may be rejected

from CBC News:
A temporary foreign worker from Romania says immigration policies in Canada are out of date and discriminate against people with disabilities.
Radu Bogdan has been working in Richibucto as a production line operator at Imperial Sheet Metal since 2011.
He has applied for permanent residency and hopes to bring his wife and two young children to Canada, but in a recent letter from Citizenship and Immigration Canada he was told his son may not meet the requirements.
Bogdan's 6-year-old son has Down Syndrome.
"My son teaches how to love every day," Bogdan said. "He's a wonder, he's a miracle for us."
The letter from CIC says in part, "Your family a person whose health condition might reasonably be expected to cause excessive demand on social services in Canada."
The average cost for health and social services in Canada is set at $6,285 per year, per person.
CIC estimates over the next five years special education costs alone for Bogdan's son would be more than $53,527 which exceeds that annual allocation.

Thursday, May 8, 2014

Specialty brew raising funds for Down syndrome

by Nancy Kelly from Nova News Now:
A special beer is going into production this month at the Bad Apple Brewhouse in Somerset that will benefit a cause close to the hearts of owner/operators Jeff Saunders and Kari Smith.
Mosaic Double IPA, which is set to go on sale by the first week of June, will be crafted from specially-imported mosaic hops. All proceeds from sales of the specialty brew will be donated to Brigadoon Children’s Camp Society, operating at nearby Aylesford Lake, and also to the local Down syndrome society.
Saunders and Smith have had a busy winter as they juggled family life and full-time careers while getting their business off the ground and experimenting with different craft beers since they opened in January. They decided to create one beer specifically as a fundraiser after their eight-month-old son was diagnosed with mosaic Down syndrome, a rare form of the genetic condition.
“We wanted to do something that our customers would like and that could help too,” said Saunders, adding the fundraising effort is “about our child and raising public awareness about the syndrome.”

Wednesday, May 7, 2014

teenager arrested and left ‘terrified’ in cell for nine hours after trying to retrieve favourite baseball cap from school on bank holiday Monday

UK - A family has lodged a formal complaint against the Met Police after their teenage son, who has Down’s syndrome, was arrested and detained for nine hours after trying to collect his favourite baseball cap from school on bank holiday Monday.
Officers issued 19-year-old Abdul Al-Faisal with a caution for burglary over the incident in which he set off an alarm and was caught, with the cap in his hands, at 10am yesterday.
Abdul’s mother Roshina Al-Faisal told the Evening Standard how her son has a mental age between 10 and 12 years old and did not understand what had happened. She said she arrived at the police station to find her son “terrified” and in tears.
The family say Abdul was handcuffed, had his fingerprints taken, swabbed for DNA and had his details put on record – all while his parents did not know where he was.

Tuesday, May 6, 2014

Man With Down Syndrome Fulfills Life Goal, Sings National Anthem At Red Sox Game

by Ryan Grenoble from The Huffington Post:

Many people dream of singing the national anthem at a major sports event, but few can do it with a spirit rivaling Michael Mullins.
Mullins, a 38-year-old die-hard Red Sox fan, has Down syndrome. Last week, he realized a dream he's had for nearly a decade: Singing "The Star-Spangled Banner" at Fenway Park, capacity 37,400, to open for the Red Sox.
According to the Metro West Daily News, Mullins has spent the last 10 years singing the national anthem for a minor league team, and four years lobbying the Red Sox for a chance to sing at Fenway. He's been helped along by the Michael Lisnow Respite Center in Hopkinton, Mass., where he lives.
"Nope, I'm not nervous," he told Boston's WCVB in an interview before the big day. "Piece of cake."
"He is so excited. This is the biggest day of his life," added center director Sharon Lisnow.
A video of the performance, uploaded May 3, features Mullins proudly belting out the national anthem, even throwing in some vibrato here and there. He's flanked by Dan Cloutier and Arva Ferguson, who regularly sing with him at the Respite Center. The video description reads:
This video literally captures a dream coming true as Mike raises awareness for adults with disabilities while showcasing his amazing singing ability. Please share this video to raise more awareness and promote an amazing dream coming true.
Fittingly, reports Metro West, Mullins' favorite part of the national anthem is the song's last line, a word he stretches out, hanging it proudly in the air. That word? "Brave."

Monday, May 5, 2014

Stafford student to walk the runway at fashion show from The Stafford County Sun:
Jose Louis Moreno-Capuzano of Stafford is a model at the Global Down Syndrome Foundation’s Fashion Show on May 7 in Washington, D.C.
The show is a fundraiser that features more than 19 models with Down syndrome— including Jose, a first-grader at Margaret Brent Elementary School.He is the son of Jose L. Moreno and Maria G. Campuzano, of Stafford County. He has two brothers, Sahid and Jesus. He is the oldest son, and like his brothers, he was born with Down syndrome.
Jose loves music, playing with his brothers, watching cartoons, playing in the park and attending school, according to organizers.

Sunday, May 4, 2014

A Dream for My Daughter With Down Syndrome

by The Stir Bloggers from The Stir:
I've debated posting this letter a million times. Mostly because I know I have readers who will not get this. Some readers won't because they love me and my family and Lily so much...they just don't ever want us to hurt. So to prevent that hurt -- or stop it -- they will say things like, "please just accept Lily for who she is. Just give her time, and trust that she is who God made her to be."
Some readers won't get this letter, because... they simply can't relate. As understanding as they might be, they will never ever know how it feels be the parent of a child with special needs. And believe me when I say, I don't blame them for not being able to relate. I'm in a club that I didn't choose to be in myself, although I wouldn't bargain my way out of it if I could.
I've learned too much, loved too much, grown in ways I didn't know I needed to, discovered little rooms...vast my heart that I never knew existed since having Lily. I cannot imagine, and I don'twant to ever imagine, life without Lily; this letter has absolutely nothing to do with a lack of love for her or a desire for her to be someone else. She's my Lily, and I truly believe that quote at the top of my blog...the one that says there was no mistake here. I believe it with all my heart.
But there are some days when I dream....

Saturday, May 3, 2014

Down Syndrome children have high IQ, specialist says

DHA chief calls for the need to integrate them into mainstream
from Gulf News:
Dubai: The Dubai Health Authority (DHA) held a campaign to raise awareness about Down Syndrome at the Al Barsha primary health care centre last week.
Down Syndrome is a chromosomal condition, which affects physical and mental development. It is caused by the presence of an extra chromosome.
The event was inaugurated by Eisa Al Maidour, Director-General of the DHA. More than 30 families with children and adults with Down Syndrome took part in the programme.
In the UAE, one out of 319 babies have Down Syndrome. The World Health Organisation (WHO) estimates the incidence of Down Syndrome to between 1 in 750 live births worldwide.
“These awareness initiatives help people understand Down Syndrome better and provide an active platform for people dealing with Down Syndrome to raise their queries.”

Friday, May 2, 2014

Bat Boy With Down Syndrome Hits Home Run On Senior Night (Video)

by Darren Hartwell from NESN:
“Fast” Eddie Gordon will never forget his Senior Night.
Eddie, who was born with Down syndrome, has served as the bat boy for the Timberline High School baseball team in Boise, Idaho, for the past two seasons. On Monday, he finally had the chance to step in the batter’s box.
Penciled into Timberline’s lineup as the leadoff hitter, Eddie drew a large ovation from the crowd and both dugouts, who all started chanting his name as he stepped to the plate. After a few swing attempts, Eddie made contact and took off around the bases.
Eddie could hardly conceal his grin as he crossed home plate and was mobbed by his teammates. Check out the cool moment in the video below, which also features interviews from Eddie and his coach.

Thursday, May 1, 2014

"Down Syndrome Awareness" License Plate bill clears state House

by Dave Fields from
Lafayette, LA -State legislation that would promote awareness of Down Syndrome with a special license plate has cleared the state House of Representatives and made it through Senate committee, says the representative who initiated the bill.
Rep. Terry Landry, D-Lafayette, said he authored and proposed HB 323 to create a special "Down Syndrome Awareness" prestige license plate of behalf of the Down Syndrome Association of Acadiana (DSAA). The non-profit organization's mission, according to its website, "is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome, their families, and our community."
Landry said that there are a number of public interests in Acadiana worthy of attention, but emphasized that DSAA is doing great work for families with kids with the syndrome and that public should be made aware of the most pressing needs of the organization.
"We should be aware of Down Syndrome and we should conduct research about it," Landry said.