Sick Kids Williams Syndrome Workshop

Hi! I'm Allie, one of Paul's daughters. The last post on here was over two years ago, so I'm going to try to pick it up again.

To start off, you should know about the Williams Syndrome Workshop at Sick Kids Hospital. This event occurred in August, and was totally free, thanks to sponsors and donators. I believe there were about 100 people there, and my highlight was being able to meet other kids with WS for the first time. This was the first time the event was held, but the wonderful event coordinator, Melanie Côté, has plans for an annual conference. There is no information posted about this yet, but you can keep informed on the facebook page: https://www.facebook.com/events/684278581645218/?ref=22

I hope that every family affected by Williams Syndrome in the Toronto area will be able to make it out to the next one. There is no age limit, and it was great to share stories with parents, learn from experts in genetics and psychology, and gain a boatful of new resources. (Plus it was just a whole lot of fun!)

Williams Syndrome Researcher Named to American Academy of Arts and Sciences

Johns Hopkins Gazette | April 27, 2009:

"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. In particular, Landau investigates these issues in normally developing children and in people who have severe spatial impairments due to a rare genetic condition known as Williams syndrome.

She is a fellow of the Cognitive Science Society, the American Psychological Society, the American Psychological Association and the American Association for the Advancement of Science. Last month, the John Simon Guggenheim Memorial Foundation named her a Guggenheim Fellow. She also serves on the governing board of the Cognitive Science Society and recently completed a term on the board of scientific affairs of the American Psychological Association. She is at work on a book to be titled 'Gene, Brain, Mind and Development: The Puzzle of Williams Syndrome.'"

New Help for Williams Syndrome Diagnosis?

PharmaLive: Ontario Biotech Company Wins Award for Innovation and Receives Investment to Grow Business:

"Cytognomix is developing and manufacturing DNA probes that can pinpoint genetic abnormalities more precisely than current methods and could, in the future, result in more effective disease diagnostics and more tailored treatment pathways for patients.

“These probes are the genetic equivalent of finding a needle in the haystack,” commented Glen Smeltzer, President of the Stiller Centre. “We are extremely proud to present the inaugural Stiller Centre Prize to such an innovative local business.”

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“Subtle differences in chromosome structure are very common in genetic disorders,” commented Dr. Rogan, who was named a Canada Research Chair this month. “The probes will enable quicker and more precise identification of these diseases and other genetic abnormalities, and will aid physicians in choosing relevant and suitable treatments for the patient.

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One example of how these probes can be invaluable is in cases of Williams syndrome which causes the narrowing of the aorta, one of the heart’s major arteries. This syndrome can sometimes cause a disorder in some children that results in delayed mental development. Probes have already been developed to detect these abnormalities, which leads to the swift enrollment of the child in remedial programs.

“This is the real clout of genomics - to marshall the power of predictive medicine,” continued Rogan."

Local woman has something to smile about

telegraphjournal.com - Local woman has something to smile about - Breaking News, New Brunswick, Canada

Michelle Arsenault, is a Saint John woman with Williams Syndrome.

Her debilitating condition caused her to have severe dental issues throughout her life, with teeth so misaligned they were almost in three rows. The condition of her teeth made it difficult to chew and swallow food.

Arsenault, who lives with her single mother Darlene Gallant and sister Jocelyn, works at Key Industries. Her family was unable to afford the dental work she required to fix her teeth.

That is, until the dental committee of the Saint John Kiwanis Club stepped in to pay for the procedures.

After four years, Arsenault has a Colgate smile.

Louisville Benefit for Williams Syndrome Association

Thursday: Benefit for Williams Syndrome Association | courier-journal | The Courier-Journal:

"Check your diets at the door and enjoy a sampling of 10 desserts to raise funds for the Williams Syndrome Association. The all-day benefit will be from 10 a.m. to 10 p.m. Thursday at Sweet Surrender Dessert Cafe in Crescent Hill.

Williams Syndrome is a rare genetic disorder characterized by physical and developmental disabilities. It occurs in about one out of every 7,500 births.

During the day a 10-inch cake and other prizes will be raffled, with proceeds to benefit the association."

Getting Ready for School? Teacher Aids for Kids with WS

Click here for a link to the WSA page for educators...

"As educational psychologist Eleanor Semel says, 'Educators are confused because the Williams syndrome child tests like the retarded child, talks like a gifted child, behaves like a disturbed child, and functions like a learning-disabled child.' Each of these terms has a specific meaning in the world of special education, yet none seems to fit the characteristic peaks and valleys in Williams syndrome. The result is that children with Williams syndrome are generally not well served by schools."

The Neurocritic: Broken Social Scene

The Neurocritic: Broken Social Scene:

The Neurocritic reviews a new study on gaze analysis that compares WS subjects to typically developing and autistic subjects.

"The WS subjects viewed faces for a longer duration than did their respective controls. Specifically, the WS group spent more time viewing the eyes, but not the mouth. Conversely, as has been demonstrated in previous studies, the participants with autism spent significantly less time looking at faces (eyes in particular) than did their controls.

Whilst individuals with autism spent a significantly smaller proportion of time than typical fixating on characters’ eyes (17% of face gaze time), those with WS spent significantly longer than typical fixating on the same region (58% of face gaze time). Visual attention to the eyes may be implicated in other divergent abilities in face perception, such as the interpretation of gaze cues and expressions, where individuals with WS are more proficient than those with autism."

Vocabulary Abilities of Children With Williams Syndrome: Strengths, Weaknesses, and Relation to Visuospatial Construction Ability -- Mervis and John 5

Vocabulary Abilities of Children With Williams Syndrome: Strengths, Weaknesses, and Relation to Visuospatial Construction Ability -- Mervis and John 51 (4): 967 -- Journal of Speech, Language,:

"Conclusions: Concrete vocabulary is a relative strength for children with WS; relational vocabulary ability is very limited and is at about the level of visuospatial construction ability. Accurate determination of group comparison results depends on stringent group matching."

UD professor examines spatial deficits in Williams syndrome children

UD professor examines spatial deficits in Williams syndrome children:

"“We believe that the spatial distortions we see in drawings and other visio-spatial construction tasks by people with Williams syndrome do not reflect corresponding distortions in their perception of the world. We will argue that this syndrome leaves spared a number of spatial cognitive subsystems, including object recognition and identification, biological motion perception and spatial languageŠand that some of the most profound deficits are not due to abnormal architecture, but to small misadjustments that culminate in large downward spiraling performance.”

One example of this, Hoffman said, is that persons with WS know that their drawings are not correct. The most common errors involved choosing an incorrect part and drawing it in an incorrect location. They can easily distinguish between correct and incorrect drawings of models, but they can’t do better when they try again, he said.

“Drawing or assembling parts to make a model is an extremely frustrating experience for them because they are aware of their poor abilities in this domain, and they usually resort to random changes in an effort to correct their efforts. However, the defect is not simply a problem with motor output either because they can trace drawings just fine. So their spatial deficits are not due simply to either problems in input (perception) or output (action) but to some cognitive processes in between. We are now trying to characterize the nature of these processes,” he said. "

New book chronicles family's challenges raising daughter with Williams Syndrome

Community Press - Book chronicles family's challenges:

"'Another Day, Another Challenge,' Strebe's first published work, is the story of a girl with Williams Syndrome and the story of a family that dealt with the challenges - it is the story of Strebe's youngest daughter Michelle."

Penny's Thoughts on Williams Syndrome

Penny is a Floridian and mom to a 4 year old boy with Williams Syndrome. She has done some great research on WS and how to get help. You can check out her mulitple blogs here:

	Calcium Information
	IEP Information
	Keith Alan
	What Is Williams Syndrome?
	Information for Teachers
	What Is PDD-NOS?
	Research Information

Enlivening Lives! - Williams Syndrome Students in MA Share Their Skills and Joy

'They enliven people's lives' - MassLive.com:

"Berkshire Hills is the nation's only private, post-secondary residential school serving students who have this combination of gifts and challenges.

'There are so many kinds of intelligence and so many ways to be productive,' said Executive Director Ljuba Marsh. 'This school allows people to thrive and serve their communities. They go out to nursing homes, senior centers and elementary schools to perform. They enliven people's lives.'

Of the 26 students enrolled at the school, many have a rare genetic disorder called Williams Syndrome, while others have Asperger's Syndrome, cerebral palsy, Down Syndrome, or visual impairments. The school's curriculum is music-focused but aims to strengthen academic skills as well as job readiness."

Shall We Dispose the Disabled?

kerux noemata: Shall We Dispose the Disabled?:


From my personal blog: "I thank God that no one 'counselled us' out of the safe delivery of our special needs child! What would our life be without him?!"

Beyond nature vs. nurture: Williams syndrome across cultures

Salk Institute:

Identified more than 40 years ago, Williams syndrome occurs in an estimated one in 20,000 births worldwide. It arises from a faulty recombination event during the development of sperm or egg cells. As a result, almost invariably the same set of about 20 genes surrounding the gene for elastin is deleted from one copy of chromosome seven, catapulting the carrier of the deletion into a world where people make much more sense than objects do. Despite a myriad health problems and a generally low IQ, children with Williams syndrome are loquacious, sociable, and irresistibly drawn to strangers.

To determine the extent to which this behavioral profile is universal across culture, the researchers settled on two vastly differing environments: the United States and Japan, whose cultural differences are said to be aptly summarized in two proverbs: In America, “The squeaky wheel gets the grease,” while in Japan, “The nail that stands out gets pounded down.”

Using a questionnaire developed by Salk researchers, Bellugi and first author Carol Zitzer-Comfort, a professor at California State University in Long Beach, asked parents in the U.S. and Japan to rate the tendency of their child to approach others, their general behavior on social situations, their ability to remember names and faces, their eagerness to please other people, their tendency to empathize with others’ emotional states, and the tendency for other people to approach their child.

Despite the differences in upbringing, in both countries children with Williams syndrome were rated significantly higher in global sociability and their tendency to approach strangers than were their typically developing counterparts. But cultural expectations clearly influenced social behavior, since the sociability of normal American kids was on par with Japanese Williams syndrome kids, whose social behavior is considered out of bounds in their native country.

Goldmine of Research on People with Williams Syndrome

Daniel Levitin, Ph.D.

Not sure how I missed this! Levitin teaches here in Canada at McGill University. This page is full of written, audio and video reports of his findings.

The sidebar has a link to other scientists researching Williams Syndrome. Here is a goldmine!

Williams Syndrome: It's Not a Fairy Tale : NPR

Williams Syndrome: It's Not a Fairy Tale : NPR:

All Things Considered, October 14, 2006 · Fairy tales tell of wee folk who spend their lives singing and dancing. A rare genetic disorder called Williams Syndrome lends scientific support to the legends. Drummer Jeremy Vest is among those who are diagnosed with Williams Syndrome.

The premise of this article (that WS folks might be the historical reality of pixies and fairies) I find rather offensive, but the audio interview with Jeremy Vest is informational. Especially to a Dad with a drumming son!

Williams syndrome - Social Inhibition - Personality - Developmental Disorders - Brain Disorders - David Dobbs - New York Times

Williams syndrome - Social Inhibition - Personality - Developmental Disorders - Brain Disorders - David Dobbs - New York Times

The low I.Q., however, ignores two traits that define Williams more distinctly than do its deficits: an exuberant gregariousness and near-normal language skills. Williams people talk a lot, and they talk with pretty much anyone. They appear to truly lack social fear. Indeed, functional brain scans have shown that the brain’s main fear processor, the amygdala, which in most of us shows heightened activity when we see angry or worried faces, shows no reaction when a person with Williams views such faces. It’s as if they see all faces as friendly.

People with Williams tend to lack not just social fear but also social savvy. Lost on them are many meanings, machinations, ideas and intentions that most of us infer from facial expression, body language, context and stock phrasings. If you’re talking with someone with Williams syndrome and look at your watch and say: “Oh, my, look at the time! Well it’s been awfully nice talking with you . . . ,” your conversational partner may well smile brightly, agree that “this is nice” and ask if you’ve ever gone to Disney World. Because of this — and because many of us feel uneasy with people with cognitive disorders, or for that matter with anyone profoundly unlike us — people with Williams can have trouble deepening relationships. This saddens and frustrates them. They know no strangers but can claim few friends.