Williams Syndrome Web Watch

Lincoln County Record » Cayson’s Disney Wish Granted

noreply@blogger.com (Paul Martin) — Mon, 16 Jan 2012 18:26:00 +0000

Lincoln County Record » Cayson’s Disney Wish Granted:

"Young Cayson suffers from a genetic disorder called Williams syndrome, also known as Williams-Beuren syndrome, a condition that causes loss of genes that can affect development. In Cayson’s particular case, one of the missing genes causes a loss of elastin in blood vessels and other tissues, which gives him a heart condition, as the missing gene causes blood vessels to narrow. Not all children with Williams syndrome suffer from the same heart condition. However, the McClures find hope by believing it’s, “in the Lord’s hands. We take it day-by-day,” says mother Tameran. Cayson had a stint put in his heart the week before Thanksgiving that will stay in for the rest of his life, and was still in the hospital on Thanksgiving, so the mother remarked they felt, “lucky he was well enough to go.”"

'via Blog this'

Absolute Pitch in Williams Syndrome

noreply@blogger.com (Paul Martin) — Mon, 16 Jan 2012 18:25:00 +0000

Absolute Pitch in Williams Syndrome: "Absolute pitch is reported to occur in 1 out of 10,000 persons, usually those trained in music before age 6. We demonstrate that the five individuals we tested, who have Williams syndrome, a condition caused by a microdeletion of about 20 genes in the q11.23 region of one of their two chromosomes number seven, possess near ceiling levels of absolute pitch despite their limited cognitive abilities. With these individuals, we also describe our preliminary findings on relative pitch, transposition, and retention. We discuss the possibilities that (1) the incidence of absolute pitch among individuals with Williams syndrome is higher than that found in the general population and (2) the normal early childhood critical period of absolute pitch acquisition may be extended in individuals with Williams syndrome."

'via Blog this'

The Times Herald - Local mom details experience raising son with Williams Syndrome

noreply@blogger.com (Paul Martin) — Mon, 16 Jan 2012 18:24:00 +0000

The Times Herald - Local mom details experience raising son with Williams Syndrome:

"Children with Williams syndrome will perform these friendly acts naturally, and willingly, while making each person they’re greeting feel like the man of the hour."

'via Blog this'

Psycholinguistic abilities of children with Williams syndrome. | World Intelligence Network

noreply@blogger.com (Paul Martin) — Wed, 11 Jan 2012 17:54:00 +0000

Psycholinguistic abilities of children with Williams syndrome. | World Intelligence Network:

"When groups were compared, we observed inferior performance of the WS group on all ITPA subtests when compared with typically developing groups. Moreover, an interaction between reception and group was found, only the WS group demonstrated superior performance on the visual reception subtest when compared to the auditory reception subtest. Evidence from this study offers relevant contributions to the development of educational intervention programs for children with WS."

'via Blog this'

At 10 years old, already a philanthropic entrepreneur - Daily Pilot

noreply@blogger.com (Paul Martin) — Fri, 06 Jan 2012 19:06:00 +0000

At 10 years old, already a philanthropic entrepreneur - Daily Pilot:

"Jack, a great lover of all things sweet and chocolately, wanted to incorporate all his favorite flavors, but it was also important for his candy to be organic, with no dyes or preservatives, so that it's safe for his younger brother Colin, 8.

Colin was born with Williams syndrome, a rare genetic disorder that severely restricts the food he can eat. It also causes serious medical conditions, and learning and social challenges.

"It's really hard for us to find food he can have," said Marcy McKenna.

Jack is also donating 20% of his profits to the Williams Syndrome Assn.

"I wanted to try to donate money to them, so they can fix themselves and get help," Jack said.

Colin, who was munching on a piece of his big brother's toffee, said it makes him feel special that Jack did this for him.

"I love my brother," he said.

The idea for Jack's Rockin' Chocolate Factory started with a simple conversation Jack had with his mother about college and business."

'via Blog this'

Announcement from Australian Williams Syndrome Forum - NSW Snug Retreat

noreply@blogger.com (Paul Martin) — Fri, 06 Jan 2012 14:37:00 +0000

Australian Williams Syndrome Forum - NSW Snug Retreat:

"I am spreading the word to NSW families about a Snug Retreat specifically for families with a Williams Syndrome child. The dates are Monday 5th March –Friday 9th March 2012. There are places for up to five families and the cost will only be the travel to and from Myuna Bay Sport and Recreation Centre. Myuna Bay is just north of the Central Coast. "

'via Blog this'

Ex-worker gets prison for stealing from client - Toledo Blade

noreply@blogger.com (Paul Martin) — Tue, 06 Dec 2011 19:54:00 +0000

Ex-worker gets prison for stealing from client - Toledo Blade:

"John Abood was the perfect victim, his sister said.

Born with Williams syndrome, Mr. Abood has a very low IQ, trouble with the most basic math, and is very friendly and trusting — all symptoms of the rare genetic disorder.

So, when his siblings realized the 59-year-old man had no money in his checking account and extensive overdraft fees, they knew someone likely had taken advantage of Mr. Abood’s trust.

A former Anne Grady Center employee once assigned to help Mr. Abood buy his groceries and pay his bills was sentenced Monday in Lucas County Common Pleas Court. Gary Smotherman, 39, of 146 Rosalind Pl. was sentenced to 17 months in prison and ordered to pay $6,500 in restitution."

'via Blog this'

DBHS Gives Student a Special Gift - Diamond Bar, CA Patch

noreply@blogger.com (Paul Martin) — Fri, 25 Nov 2011 16:08:00 +0000

Calvin, 17, has Williams Syndrome, a rare neurodevelopmental disorder. Set to graduate from DBHS next year, Calvin spent his high school years as water boy for the football team, and was also involved with track and field. During the school’s recent Homecoming game, Calvin received a big surprise: the athletic department gave him his own letterman jacket.
“Coach Ryan Maine and trainer Stacy Camou got together and gave him a letterman jacket right before the game, when the football players were announced with their parents and standing on the sideline,” Cloris said. “They called us up and placed us in the middle of the field and said some wonderful things about Calvin. It was so touching and wonderful, and he was so excited and happy.”
Although Calvin couldn’t play or compete, being part of the team in some capacity was an enriching experience.

DBHS Gives Student a Special Gift - Diamond Bar, CA Patch:

'via Blog this'

Call for Presentations | Williams Syndrome Association

noreply@blogger.com (Paul Martin) — Wed, 09 Nov 2011 18:14:00 +0000

Call for Presentations | Williams Syndrome Association:

The Williams Syndrome Association will celebrate 30 years of support and education for individuals with WS and their families at next summer’s National Convention – July 3-7 in Boston, Massachusetts. Throughout the week we will bring together more than 60 experts for education and networking opportunities. The WSA’s national convention and international professional conferences are the premier continuing education event for Williams syndrome, offering unparalleled program quality and diversity. We hope you will join us!

Hometown Hero: Sweet Volunteer is 'Asset to Beaumont' - Royal Oak, MI Patch

noreply@blogger.com (Paul Martin) — Tue, 08 Nov 2011 15:58:00 +0000

Hometown Hero: Sweet Volunteer is 'Asset to Beaumont' - Royal Oak, MI Patch:

Joshua Levinson is a popular person atBeaumont Hospital in Royal Oak for a couple of reasons — his infectious smile and his candy cart.
The 31-year-old Royal Oak resident is known in some circles at the hospital as the Candy Man — the guy, who as the Sammy Davis Jr. song suggests, “makes the world taste good.”
For the past half-dozen years or so, he has volunteered five mornings a week at Beaumont selling chocolate and sugary treats to the staff and visitors, and otherwise brightening mornings with his winning smile.
"I like my job. It's fun," he said as he made change for a woman in the south entrance lobby. He easily charms the customer with his friendly face and warm personality. He may not say a lot to her, but she leaves smiling.
“I would say more people know Joshua than me,” said his father, Dr. Marty Levinson, a Beaumont pediatrician, “and I have been on staff here for 31 years.”

Super-social gene may hold clues to autism, other disorders

noreply@blogger.com (Paul Martin) — Tue, 25 Oct 2011 15:40:00 +0000

Read full article here (with video)

In some cases, he's taken cells from children with Williams syndrome, but instead of using the somewhat painful procedure to obtain skin cells, he's taken cells from lost baby teeth, using a so-called Tooth Fairy extraction kit.Gage said he’s intrigued at the idea of dissecting something as complex as human behavior down to the level of cells in a petri dish.
Already, since the grant was awarded in May, Gage and his colleagues have shown that the early proliferation of brain cells is lower in people with Williams syndrome than in those with normal function.
With time and persistence, it might one day be possible to develop drugs or other therapies that could be used to treat the conditions, Gage said.
Williams syndrome is the perfect test case for studying the link between genes and behavior, Bellugi said. The disorder is very specific, occurring only when a certain cluster of genes is missing from one of two copies of chromosome 7.
“We’re only talking about something like 25 to 28 genes out of 30,000 genes in the brain,” Bellugi said. “And it’s always the same set of genes.”

Learning to see: How vision sharpens – The Chart - CNN.com Blogs

noreply@blogger.com (Paul Martin) — Mon, 19 Sep 2011 15:21:00 +0000

Learning to see: How vision sharpens :

"The champion of the infant visual system is motion, which develops early and is relatively difficult to disrupt. At four weeks of age, babies can detect a flickering stimulus in a single location almost as well as adults. Babies can discriminate motion direction around seven weeks and speed by twenty weeks. Perception of global motion patterns, like raindrops seen through the windshield of a moving car, improves rapidly between three and five months and then continues to develop slowly through middle childhood. This aspect of motion processing, the most vulnerable to disruption, is impaired in some developmental disorders, including dyslexia, autism, fragile-X syndrome, and Williams syndrome."

'via Blog this'

Six Johns Hopkins Faculty Named Guggenheim Fellows | R&D Mag

noreply@blogger.com (Paul Martin) — Sun, 18 Sep 2011 22:52:00 +0000

Six Johns Hopkins Faculty Named Guggenheim Fellows | R&D Mag:

"Barbara Landau is the Dick and Lydia Todd Professor and chair of the Department of Cognitive Science. Her work focuses on language learning, spatial representation and the relationships between these foundational systems of human knowledge. "The fellowship will allow me to work full-time during my sabbatical this coming year on a book that illuminates the nature of spatial knowledge in people with an unusual genetic deficit that results in severely impaired understanding of space," Landau said. The book, she said, will be titled 'Gene, Brain, Mind and Development: The Puzzle of Williams Syndrome' and is under contract with Oxford University Press. "I'll be spending most of the year here at Johns Hopkins but will also be traveling a bit to work with colleagues who specialize in the nature of human spatial knowledge," she said."

'via Blog this'

LT alum takes home gold at Special Olympics games in Greece

noreply@blogger.com (Paul Martin) — Thu, 14 Jul 2011 15:58:00 +0000

For a kid who started to swim before she could walk, competing for Team USA is sweet indeed for Jeanne DeCarlo at the Special Olympics World Summer games in Athens.

And winning a gold medal in her third and final race July 3 was like the proverbial icing on the cake for the Lyons Township High School alumna from Brookfield with the encouragement of her own cheering section of 10 family members and friends.

“It was tremendous,” DeCarlo said after a whirlwind 10 days of competing in the same venue as the 2004 Olympics. “I did very well, and everyone was very helpful.”

DeCarlo, 37, won a gold medal in the 4x50 meter freestyle relay. a bronze in the 100 meter freestyle and a fourth-place in the 50 meter freestyle race.

“It was amazing meeting people from all over the world,” she said. “We traded pins, and I have 40 pins from different countries, like Canada, Mexico, New Zealand, Germany and India.”

A highlight of the trip was hearing Stevie Wonder perform at the opening ceremony.

“It was amazing to see him. He got the crowd dancing,” DeCarlo recalled. “I did a dance with a Greek dancer, and we went around in circles.”

ABC News Report (20/20) on Williams Syndrome (in two parts)

noreply@blogger.com (Paul Martin) — Sat, 02 Jul 2011 17:51:00 +0000

Illinois Swimmer with Williams Syndrome Competing in World Special Olympics

noreply@blogger.com (Paul Martin) — Fri, 17 Jun 2011 00:31:00 +0000

June 16, 2011 (ELMHURST, Ill.) (WLS) -- On Friday, a local gold medal swimmer is heading to Greece to represent the U.S. in the Special Olympics World Summer Games.

She is the only swimmer from Illinois.

After 23 years of winning medals in different events, 37-year-old Jeanne Decarlo's dream has come true.

At Elmhurst's YMCA, Jeanne practices swimming as her coach and mom Sheri encourages her to swim faster.

Swimming has always been something Jeanne does well. She was born with Williams Syndrome.

Study Suggesting Connections Between Autism and Williams Syndrome Can be Downloaded free here

noreply@blogger.com (Paul Martin) — Fri, 10 Jun 2011 02:34:00 +0000

Neuron - Multiple Recurrent De Novo CNVs, Including Duplications of the 7q11.23 Williams Syndrome Region, Are Strongly Associated with Autism:

Williams Syndrome Teen Speaks Out Against Bullying

noreply@blogger.com (Paul Martin) — Fri, 10 Jun 2011 02:19:00 +0000

Click the title to watch the video.

Scientists find new genetic clues that may link Autism to Williams Syndrome

noreply@blogger.com (Paul Martin) — Fri, 10 Jun 2011 02:09:00 +0000

Scientists find new genetic clues to autism - The Checkup - The Washington Post:

"The third analysis, led by by Matthew State of Yale and colleagues, group found an association between mutations and autism that, when deleted, also play a role in Williams syndrome, a rare developmental disorder. People with that condition tend to be highly social, sensitive and empathetic. In contrast, people with autism have difficulty interpreting social cues and interacting with others.

“This relatively small genomic interval clearly holds important clues to understanding the social brain,” State said in a statement.

But given the large number of genetic variations that the analyses have identified, the findings indicate that the condition is extremely complicated, the researcher said.

“The diversity implies that a treatment for one form of autism may have no value for the majority,” Wigler said."

ABC News runs a couple of pieces on Williams Syndrome

noreply@blogger.com (Paul Martin) — Fri, 10 Jun 2011 02:03:00 +0000

Salk researcher gets $5.5 million grant to study Williams syndrome

noreply@blogger.com (Paul Martin) — Sat, 21 May 2011 00:00:00 +0000

The Salk Institute for Biological Studies was awarded a $5.5 million research grant today to study Williams syndrome as a way to learn more about neurological development in children.

The award from the National Institute of Child Health and Human Development could help researchers untangle the connection between genes and social behavior.

“How the brain processes social information and integrates it with other forms of perception and learning is one of the major frontiers in neuroscience,” said Ursula Bellugi, director of the Laboratory for Cognitive Neuroscience at the institute.

“Using Williams syndrome as the basis for a new approach to social neuroscience is exciting and promising, in part because its genetic basis is clearly understood, and it is associated with a very specific pattern of cognitive strengths and weaknesses and some puzzling paradoxes,” the professor said.

The condition is the result of a faulty recombination of cells during the development of sperm or egg cells, leaving nearly all sufferers lacking certain genes.

Victims are gregarious and attracted to strangers, but have difficulty understanding inanimate objects. They are beset with health problems and have a low IQ.

Bellugi said victims of the syndrome who are asked to draw a bicycle will instead draw its parts randomly across a piece of paper.

“Understanding the mechanisms and pathways underlying the organization of human social behavior is important in a wide variety of mental disorders,” Bellugi said. “By dissecting Williams syndrome, we hope to gain new insight into other neurodevelopmental disorders such as autism.”

Battling Williams syndrome - FOX23 News

noreply@blogger.com (Paul Martin) — Wed, 11 May 2011 15:42:00 +0000

Battling Williams syndrome - FOX23 News :

"Vanderbilt University is studying how music - and more - affects anxiety at this special camp for people with Williams syndrome.

'It's kind of a lesson in contradictions. How can people who have significant developmental disabilities also have pronounced and marked interest in music and musical talent,' Dr. Elisabeth Dykens asked?

The answer could lead to new treatments for all people with anxiety. Research Seth is proud to be a part of."

There is a very good and short video on the link or you can go directly to it here: http://clipsyndicate.com/video/playlist/18795/2450897?wpid=9616

President Nominates Former NAB Exec To Intellectual Disabilities Committee

noreply@blogger.com (Paul Martin) — Wed, 11 May 2011 15:36:00 +0000

President Nominates Former NAB Exec To Intellectual Disabilities Committee - 2011-05-10 21:38:04 | Broadcasting & Cable:

"President Obama has nominated former National Association of Broadcasters government affairs executive Carol Wheeler to be a member of the President's Committee for People with Intellectual Disabilities.

Wheeler, who most recently was coordinator for the Washington Chapter of Project Children, was formerly VP for government affairs with NAB as well as a consultant to America's Public Television Stations, which advocates for noncom stations in Washington.

Wheeler is the mother of a child with Williams Syndrome, a genetic disorder that can lead to cardiovascular problems and developmental and learning difficulties in children who are often also highly verbal, social and musically gifted.

'These fine public servants both bring both a depth of experience and tremendous dedication to their new roles,' said the president in announcing a series of appointments to the committee. 'Our nation will be well-served by these men and women, and I look forward to working with them in the months and years to come.'

'The mission of committee is 'to provide advice and assistance to the President of the United States and the Secretary of Health and Human Services on a broad range of topics that impact people with intellectual disabilities and the field of Intellectual Disabilities.''

iPads help kids with disabilities to learn

noreply@blogger.com (Paul Martin) — Wed, 11 May 2011 15:34:00 +0000

MILFORD, Pa. — Gabe wasn't speaking until he started using an iPad, says Ann Gillerlane, director of the Center for Developmental Disabilities.
Three-year-old Gabe (the center asked not to use his last name) has been diagnosed with Williams syndrome, a rare neurodevelopmental disorder caused by an abnormality in chromosomes, according to the Williams Syndrome Foundation. This slows Gabe's development.
Before the iPad, Gabe wasn't talking. He couldn't communicate. He and his parents, were frustrated. But when one of the staff at the center started working with Gabe on her iPad, his interest was sparked.

Then one day at the center, Gabe said "Hee Haw," and pointed to a picture of a donkey on the iPad. Since then his language skills have been improving.
Gillerlane was amazed. "I'm not the type of person to go out and buy the latest technology," Gillerlane said. "But when I saw how Gabe was responding, I knew we had to have iPads."
Apple introduced the iPad in March 2010; an unforeseen benefit has been the way people with disabilities have used the table computer to overcome communication difficulties and learn new skills.

Davison event raises awareness of rare genetic disorder

noreply@blogger.com (Paul Martin) — Mon, 09 May 2011 13:38:00 +0000

Davison event raises awareness of rare genetic disorder :

DAVISON, Michigan — When kids and adults walked the track at Collins Stadium on Saturday they will be trying to raise awareness about a rare genetic disorder that affects at least two local families.