Williams Syndrome Web Watch

Robbie's First Flight

noreply@blogger.com (Anonymous) — Tue, 07 Jun 2016 23:21:00 +0000

If you haven't yet watched this video of a young pilot taking his brother with WS on a plane for the first time, it is well worth 5 minutes of your time.

New Study Finds That People With WS Are at Higher Risk Online

noreply@blogger.com (Anonymous) — Tue, 07 Jun 2016 23:15:00 +0000

Summary: http://www.futurity.org/facebook-williams-syndrome-1167732-2/

According to the study, adults with Williams syndrome, a rare neurodevelopmental disorder with mild to moderate intellectual disability, who frequently use social networking sites, such as Facebook, are especially vulnerable to online victimisation.

Read the original journal article here: Lough, E. & Fisher, M. (2016). Internet use and online safety in adults with Williams syndrome. Journal of Intellectual Disability Research,

Mia's story: Williams Syndrome 'a blessing' for one Red Sox family

noreply@blogger.com (Anonymous) — Thu, 29 Oct 2015 16:11:00 +0000

Ken Rosenthal, Fox Sports reporter, wore a WS necktie at Game 1 of the World Series this past Tuesday. He wrote about his friend and Red Sox scout Amiel Sawdaye's daughter Mia, and her diagnosis 2 and a half years ago.

Mia Sawdaye was born on Jan. 16, 2013. As expected, she went right to the NICU. “She didn’t look abnormal at all. There was no sense that she was any different,” Amiel recalls. “But as we were sitting in the NICU, they sent a geneticist down. And the geneticist said to us that she basically had aortic stenosis, a thickening of the aorta. That’s typically a tell-tale sign of a lot of kids with Williams Syndrome.”

http://www.foxsports.com/mlb/story/williams-syndrome-a-blessing-for-one-boston-red-sox-family-082815

St. Maries boy with disorder finally gets in the game

noreply@blogger.com (Anonymous) — Thu, 29 Oct 2015 16:00:00 +0000

Carson Wicks, 13, plays for the Lumberjacks and suffers from a rare genetic disorder called Williams Syndrome. He hasn't played in a game all year and has begged his coach all season to put him in. That all changed on Saturday. ... "He said I was going to be the quarterback … I was like, Oh no. I might get hurt," Wicks said.

http://www.krem.com/story/news/health/projectinspire/2015/10/26/st-maries-boy-with-disorder-finally-gets-in-the-game/74661324/

Ottawa Sun articles

noreply@blogger.com (Anonymous) — Wed, 22 Jul 2015 17:20:00 +0000

A couple good articles from the Ottawa Sun give some relevant info about WS.

Patients with Williams Syndrome are often plagued with eating difficulties, with many suffering from a sensitive gag reflex and raised levels of calcium. Feeding problems are what made Racey decide to take her daughter to CHEO originally and it continues to be a main focus in Violet's treatment plan as she is now fed through a feeding tube surgically inserted into her stomach. Racey is working hard to raise awareness and share knowledge about the condition so other families can consider it when searching for their own answers. "There are many doctors out there who know nothing about Williams Syndrome," said Racey, noting her own family doctor had never heard of it.

From http://www.ottawasun.com/2015/07/04/mysteries-and-unknowns-of-williams-syndrome
See more at http://www.ottawasun.com/2015/07/04/williams-syndrome-affects-1-in-10000-says-cheo-doc

Sick Kids Williams Syndrome Workshop

noreply@blogger.com (Anonymous) — Mon, 13 Oct 2014 02:34:00 +0000

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 11-year-old Okay After Getting Lured Away from Mother

noreply@blogger.com (Paul) — Fri, 07 Sep 2012 20:39:00 +0000

One story of a WS boy who was taken advantage of by some young men older than him. We need to keep an eye on every kid with special needs.

A youngster was led out of a supermarket by two teenagers in a chilling case echoing the Jamie Bulger tragedy.
Michelle Peachment, 32, was horrified when her beloved son Kieran suddenly vanished during a shopping trip.
Shoppers told her they had seen the 11-year-old - who has a mental age of seven - leave the store with two youths.

Sackville boy with Williams Syndrome brings joy to others

noreply@blogger.com (Paul) — Fri, 17 Aug 2012 18:48:00 +0000

Although mentally challenged to a degree, in that they sometimes have learning difficulties and exhibit impulsive behavior, those with Williams Syndrome are also known to be very friendly, sociable, and empathetic.
“I don’t look at it as a disability. I like to look at it as an ability to do things in a different manner,” says Michelle.
His parents say although it hasn’t been easy to raise a special needs child, Nolan has brought unimaginable joy and perspective into their lives.
“He’s taught us so many things, about what’s important in life,” says Michelle. Blaise says when Nolan gets off the bus during the school year, and walks in the door, his day was always “fantastic, the best day ever.”

http://www.sackvilletribunepost.com/Living/2012-08-15/article-3053467/Sackville-boy-with-Williams-Syndrome-brings-joy-to-others/1

Quebec actress Melissa Desormeaux-Poulin's career is booming following her performance in Incednies | Montreal Gazette

noreply@blogger.com (Paul) — Tue, 19 Jun 2012 14:50:00 +0000

Quebec actress Melissa Desormeaux-Poulin's career is booming following her performance in Incednies | Montreal Gazette:

"Right now, she’s shooting Gabrielle, a new Quebec movie produced by micro_scope, the same production house behind Incendies and Monsieur Lazhar. The second film from filmmaker Louise Archambault is about a young woman with Williams syndrome, a rare neurodevelopmental disorder. Désormeaux-Poulin plays the woman’s sister."

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PLoS ONE: Oxytocin and Vasopressin Are Dysregulated in Williams Syndrome, a Genetic Disorder Affecting Social Behavior

noreply@blogger.com (Paul) — Tue, 19 Jun 2012 14:39:00 +0000

PLoS ONE: Oxytocin and Vasopressin Are Dysregulated in Williams Syndrome, a Genetic Disorder Affecting Social Behavior:

The results of this study provide the first evidence that OT and AVP are both dysregulated in WS. Specifically, basal OT and to a lesser extent AVP, are elevated in WS versus TC, and are related to measures of WS social behavior. Moreover, results indicate that emotional (music) and physically aversive (cold) stimuli cause an exaggerated release of OT and AVP (to music and trend to cold) in people with WS, independent of their basal levels. With respect to WS social behavior, as hypothesized, higher levels of basal OT were correlated with increased approach to strangers but unexpectedly, also to decreased adaptive social behaviors. These results support our hypothesis that in WS, the neurobiological mechanisms that underly intensified emotional responses to music and possibly social behavior, may in part involve the dysregulated synthesis or release of both OT and AVP from the hypothalamic-neurohypophyseal system. Finally, the results indicate that subset(s) of the ~28 WS deleted genes and their altered expression ultimately disturb the mechanisms underlying the development or adult regulation of OT and AVP-related brain structures and consequently insight into their role in human emotion.

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A bond built through football goes way beyond the field for Mechanicsburg grad

noreply@blogger.com (Paul) — Tue, 19 Jun 2012 14:21:00 +0000

Cumberlink.com: Buddies: A bond built through football goes way beyond the field for Mechanicsburg grad:

HERSHEY — Bryton Barr had never been more popular in his life.
Surrounded by grinning children and well-wishers seeking autographs and pictures after Saturday’s Big 33 Football Classic, the former Mechanicsburg linebacker did his best to meet every request in the wake of Pennsylvania’s 24-21 overtime loss to Ohio.
But when a blonde-haired little girl in a blue Pennsylvania cheerleader uniform yelled his name and ran toward him, everyone else around seemed to be an afterthought as Barr dropped to one knee to meet the girl, 9-year-old Katie Costello, with a hug.
The two were paired together through the Big 33’s Buddy Program, which unites Big 33 players, coaches and cheerleaders with a special-needs child. The buddies spend time together on and off the field during the week leading up to the game, and many keeps those bonds beyond that Saturday night.
For Barr and Costello, though, the embrace meant a little more.
For the last four years, the pair have shared that same moment after every Mechanicsburg football game. Katie, daughter of Mechanicsburg assistant coach Jeff Costello, would seek out Bryton, win or lose, and present that infectious smile that would sweeten the feel of a win or help soften the blow of a loss.
Having Katie there after Saturday’s loss, the last of his high school career, helped Barr put things into perspective.

Elvis tune reveals clues to Williams syndrome and the genes tied to emotions | MNN - Mother Nature Network

noreply@blogger.com (Paul) — Tue, 19 Jun 2012 13:52:00 +0000

Elvis tune reveals clues to Williams syndrome and the genes tied to emotions | MNN - Mother Nature Network:

Even the toughest of hearts might melt at the sound of Elvis Presley crooning his classic song, “Love Me Tender.” Now a new study shows that when people with the genetic disorder Williams syndrome listen to that song or others, they experience changes in levels of the hormones associated with feelings of love. The findings provide clues about the genes that are tied to people's emotions, the researchers say. Researchers observed 21 people while they listened to music, and took blood samples to track levels of the hormones oxytocin and arginine vasopressin (AVP). The 13 participants with Williams syndrome — a genetic disorder that can bring developmental delays and mild mental retardation, along with an overly friendly and trusting personality — experienced a spike in both hormones when music played. Individuals without the condition saw little change to their oxytocin and AVP levels while listening. One woman with Williams syndrome experienced significantly higher spikes in the hormones, compared with everyone else in the study; in the experiment, she listened to the Elvis tune.

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Williams Syndrome Awareness Walks and Fundraisers

noreply@blogger.com (Paul) — Fri, 20 Apr 2012 13:19:00 +0000

The growth in the number of WS walks and fundraisers this year from previous years is wonderfully staggering! There seems to be a new event announced every day. That has led me to decide that I will not be posting each new event here - frankly, I just can't keep up! But there is a great place to go to find an event near you.

Williams Syndrome Association on Facebook

Williams Syndrome Association Awareness Page

These two sites are updated regularly.

Videos - Research Profiles - Brain Institute - The University of Utah

noreply@blogger.com (Paul) — Tue, 03 Apr 2012 17:31:00 +0000

Videos - Research Profiles - Brain Institute - The University of Utah:

Dr Julie Korenberg discusses her research on folks with Williams Syndrome: http://brain.utah.edu/videos/JulieKorenberg.html

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Transition Academy Helps Students with Disabilities Find Jobs and Support - Kirkland, WA

noreply@blogger.com (Paul) — Tue, 03 Apr 2012 17:25:00 +0000

Transition Academy Helps Students with Disabilities Find Jobs and Support - Kirkland, WA Patch:

"Jeremy Carrigan was born with a developmental disability called Williams Syndrome, a rare genetic disorder that often leads those with the condition to rely on full-time caregivers into adulthood.
But thanks in part to Lake Washington School District’s Transition Academy, Carrigan, now 26, has a job, money and independence."

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Friendly-to-a-fault, yet tense: personality traits traced in brain, March 22, 2012 News Release - National Institutes of Health (NIH)

noreply@blogger.com (Paul) — Tue, 27 Mar 2012 19:00:00 +0000

Friendly-to-a-fault, yet tense: personality traits traced in brain, March 22, 2012 News Release - National Institutes of Health (NIH):

"Magnetic resonance imaging (MRI) revealed that patients had decreased gray matter — the brain's working tissue — in the bottom front of the insula, which integrates mood and thinking. By contrast, they had increased gray matter in the top front part of the insula, which has been linked to social/emotional processes."

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Kandoo Band - Watch these WS folks rock out!

noreply@blogger.com (Paul) — Fri, 23 Mar 2012 18:14:00 +0000

My daughter has Williams syndrome

noreply@blogger.com (Paul) — Fri, 23 Mar 2012 18:06:00 +0000

Mom Story: My daughter has Williams syndrome:

"Tatum is in a regular kindergarten class with a full-time aide. The kids love her. She’s pulled from class for occupational therapy, physical therapy, special education and speech. Tatum will repeat kindergarten again next year.
Tatum loves singing, jumping on a trampoline, swimming, playing in the sandbox, going to the park and watching Mickey Mouse and Dora on TV. In the last six months, she started talking in short two-word sentences such as, “Cereal, please,” or “Swim, please.” Tatum’s reasoning skills are above her verbal skills -- she understands a lot more than she can communicate.
My little girl is happy, positive, loving, caring and well-adjusted. She’s very social, and everyone adores her. She hugs you if you’re sad, and she tries to engage anybody. She doesn’t worry that anything’s wrong with her because I don’t think she knows that anything is wrong with her -- I’d never tell her something is wrong."

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Imaging study reveals insula disruption in Williams syndrome — SFARI

noreply@blogger.com (Paul) — Tue, 20 Mar 2012 14:33:00 +0000

Imaging study reveals insula disruption in Williams syndrome — SFARI:

"They studied 13 people with Williams syndrome and 23 controls, only a subset of whom participated in each of the various imaging modalities.
It’s only recently that newer techniques, such as DTI and functional connectivity, which infers connectivity based on correlated activity of different brain regions, have become reliable enough to be used more widely, says Paul Thompson, professor of neurology at the University of California, Los Angeles, who was not involved in the study.
The study is unique not only in its target and combination of imaging technologies, but in the population under study. Berman’s team chose to focus only on individuals who have Williams syndrome and a normal IQ, a relatively small percentage of people with this rare disorder, to eliminate the possible effects of IQ.
Individuals with Williams syndrome have differences in brain structure, connectivity and function compared with controls, the study found. Specifically, the researchers found that the gray matter of the dorsal anterior insula, a region associated with integrating emotions and cognition, is smaller in people with the disorder, while the ventral anterior insula, an area implicated in social and emotional processes, is larger.
Functional measures corroborated these results. Blood flow is reduced in the dorsal anterior insula and increased in the ventral anterior insula.
The white-matter tract that connects the anterior insula to the amygdala and orbitofrontal cortex, known as the uncinate fasciculus, is more disorganized in people with Williams syndrome. And activity in the anterior insula is less well correlated with activity in the orbitofrontal cortex, amygdala and anterior cingulate cortex.
Perhaps most significant, the degree of alteration is linked to the magnitude of the individual’s Williams syndrome personality, as measured by a personality test.
The link between personality traits and the insula is specific: Researchers did not find a similar correlation with the hippocampus, part of the brain involved in learning and memory. And verbal IQ, which is unrelated to personality, was not linked to changes in the insula.

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Brain Architecture and Williams Syndrome | Psychology Today

noreply@blogger.com (Paul) — Tue, 20 Mar 2012 14:30:00 +0000

Brain Architecture and Williams Syndrome | Psychology Today:

"As brain studies continue, we are learning more about the neurological basis of WS. This week, an important new report was published in the Proceedings of the National Academy of Sciences. A team of scientists led by the National Institutes of Health has now found in Williams syndrome cases changes in the connectivity and volume of gray matter in a brain region called the anterior insula (AI), which is thought to control emotion and personality.

The researchers found an overall decrease in gray-matter volume in one region of the AI, along with locally increased volume in another area; compromised white-matter integrity of the structure that connects the insula with some other brain regions; and disturbed neuron interactions between the AI and limbic regions known to be involved in processing emotions. Perhaps most important, the team found that differences in the AI correlate with the extent of WS characteristics. The greater the number and degree of the AI changes, the more of the typical WS behaviors that can be observed and measured in the person."

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Williams Syndrome Grows in Awareness, Research - ABC News

noreply@blogger.com (Paul) — Fri, 16 Mar 2012 17:59:00 +0000

Williams Syndrome Grows in Awareness, Research - ABC News:

"“Awareness has skyrocketed, for a relatively rare syndrome,” said Terry Monkaba, executive director of the Williams Syndrome Association (WSA). Affecting one in 7,500 newborns, Williams Syndrome (WS) causes a combination of ebullience, empathy, fearlessness, linguistic and musical talent, elfin features, heart conditions and bad teeth.
After the “20/20″ story last June, Williams Syndrome was in the top 10 Google trends for three straight days, Monkaba said. The website averaged more than 1,000 hits per day for a month after the broadcast, she added. On an average day before that, it would get 200.
In addition, WSA fundraising is up 35 percent over last year, Monkaba said. The scholarship budget for WSA summer camps has jumped to $135,000 from $35,000 two years ago. The number of camp weeks has grown from four to eight over that period."

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Brain scans offer insight into Williams syndrome

noreply@blogger.com (Paul) — Tue, 13 Mar 2012 15:17:00 +0000

Brain scans offer insight into Williams syndrome - health - 12 March 2012 - New Scientist:

"Mbemba Jabbi at the National Institutes of Health in Bethesda, Maryland, and colleagues studied MRI scans of 14 people with the syndrome. They found that the insula – a brain region involved in emotion – was smaller than in 23 people without the syndrome.
When Jabbi's team used PET scans to examine the insula in more detail, though, they found that one area of the right insula was larger in people with Williams syndrome. Those with more extreme personality differences had more grey matter here."

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UPDATE: Family’s joy at U-turn on mobility car

noreply@blogger.com (Paul) — Wed, 07 Mar 2012 15:37:00 +0000

Family’s joy at U-turn on mobility car - News - Shields Gazette:

"A SOUTH Tyneside mum has told of her delight after Government bosses did a U-turn on the decision to take away her disabled daughter’s mobility car.

Little Amarni Gibson was told by the Department of Work and Pensions, that the VW Golf her mum Gillian uses to ferry her about would have to go – because they no longer considered her disabled enough to qualify for it.

Mrs Gibson was devastated as her eight–year-old daughter suffers from the rare genetic condition Williams syndrome and is hooked up to a feeding machine 20 hours a day.

The Gazette revealed Amarni’s plight last month, and after Mrs Gibson contacted MP David Miliband her case was referred to the Citizens Advice Bureau in Station Approach, South Shields.

But now the family have been told they will be able to keep the car plus Amarni’s disability living allowance – which had been reduced to the lowest level two years ago – would also be increased."

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A Bear and a Buddy: A Delivery that Changed a Boy's Life

noreply@blogger.com (Paul) — Fri, 02 Mar 2012 15:15:00 +0000

A Bear and a Buddy: A Delivery that Changed a Boy's Life:

"Imagine being a child and never meeting anyone like you. Imagine being a child that doesn't feel special, but ostracized. Imagine being unable to contain your excitement at meeting strangers, wanting to make friends, and seeing them turn away.

According to Holly Knaak, her son Kyle is all of those things. He's never had a true best friend. He's never known anyone his own age who looks, sounds, or behaves like him.

A week with a teddy bear has changed his life forever. Here's the story of why."

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Williams Syndrome, Their Child’s Disorder, Mobilized the Kievs - NYTimes.com

noreply@blogger.com (Paul) — Fri, 02 Mar 2012 15:14:00 +0000

Williams Syndrome, Their Child’s Disorder, Mobilized the Kievs - NYTimes.com:

"A day after their daughter was born, Mrs. Kiev was resting in her hospital room when the cardiologist stopped in. “Marshall had gone home and I was alone, and the cardiologist asked me if I had heard of Williams Syndrome, and my heart started to thump and I said to him, ‘What does that mean?’ ” She called her husband immediately."

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