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

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

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

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

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

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.

Read more: http://cumberlink.com/news/local/buddies-a-bond-built-through-football-goes-way-beyond-the/article_f0d6887e-b8ef-11e1-b4b8-001a4bcf887a.html#ixzz1yFV1LxGl
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Elvis tune reveals clues to Williams syndrome and the genes tied to emotions | MNN - Mother Nature Network

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

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

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

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)

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!

My daughter has Williams syndrome

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

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

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

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

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

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

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

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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Rare Disease Day spotlights rare conditions and need for treatments

Rare Disease Day spotlights rare conditions and need for treatments - HealthPop - CBS News:

"In the U.S., a rare disease is one that affects fewer than 200,000 people. There are about 6,800 such diseases, according to the National Institutes of Health. As many as one in 10 Americans suffers a rare disease, often struggling not just from the medical condition itself, but also to get proper diagnosis, information and care.

Examples of rare diseases include such conditions as Progeria, a syndrome characterized by premature old age; Proteus syndrome, which involves atypical growth of skin and bones; and Williams Syndrome, a disorder marked by extreme friendliness and no social anxiety.

Rare Disease Day was launched in Europe in 2008 to draw awareness to the public health issue of rare diseases. The day has since been sponsored by the National Organization for Rare Disorders (NORD) in the U.S., an organization that was established in 1983 along with the Orphan Drug Act, a law designed to promote the development of drugs for rare disorders."

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Miles for Molly fundraiser run for Ivins girl

Miles for Molly fundraiser run for Ivins girl | | St. George News | STGnews.comSt. George News | STGnews.com:

"IVINS - On March 24, Red Mountain Elementary School staff will join forces with the community to help a child in need with the Miles for Molly fundraising run.

The daughter of Ivins residents Dallas and Melissa Dixon, 18-month-old Molly, was born with a rare genetic disorder named Williams Syndrome (less than 30,000 individuals in the U.S. are affected). People with WS struggle with many critical health complications such as cardiovascular disease, muscle and bone structure issues and learning disabilities.

Weighing just 3-pounds, 10-ounces at birth, Molly has already undergone several costly surgeries to help with her condition.

She has also experienced extensive hearing loss.

Miles for Molly was organized by Linda Kreyling and Sherri Lords of Red Mountain Elementary school, where Molly’s mother teaches second grade.

“Our main goals are to help Molly while promoting the benefits of healthy living,” Kreyling said. “I would like to encourage everyone to sign up. Not only will [you be helping] a sweet and loving child, but you will be able to enjoy the beautiful scenery we have [here in Ivins].”"

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Disabled girl faces losing her lifeline - Health - Shields Gazette

Disabled girl faces losing her lifeline - Health - Shields Gazette:

"A SOUTH Tyneside mum claims her eight-year-old disabled daughter will be stranded if a Mobility car is taken away.

Little Amarni Gibson suffers from the rare genetic condition Williams syndrome, which means she is hooked up to a feeding machine 20 hours a day because she can’t eat food.

But the Department of Work and Pensions has told the family they can no longer have the VW Golf – because they no longer consider Amarni to be disabled enough to qualify for it."

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Gazette.Net: Make-A-Wish Foundation sends Urbana family to Walt Disney World

Gazette.Net: Make-A-Wish Foundation sends Urbana family to Walt Disney World:

"The local chapter of the Make-A-Wish Foundation recently granted the wish of Tatum Ridgley, 6, of Urbana, who traveled to Walt Disney World in Orlando, Fla.

“It was just one of the most amazing trips we’ve ever had,” Tatum’s mother, Lisa said. “It’s something we’d never be able to recreate. It’s something they’ll both remember.”"

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Smiling no matter what | Breaking & Daily News, Sport & Weather | TV ONE, TV2 | TVNZ

Smiling no matter what | Breaking & Daily News, Sport & Weather | TV ONE, TV2 | TVNZ:

Click on the link to a great video on some Williams people in New Zealand. Really well done!

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Tifton family starts Williams foundation - Live, Local, Late Breaking news, weather, and sports

Tifton family starts Williams foundation - Live, Local, Late Breaking news, weather, and sports:

"Dawson was diagnosed at 2 and a half years old. She says early detection is extremely important so you can start treatment as soon as possible. The most common symptoms of Williams syndrome are mental disability and heart defects.

"A lot of families don't have their specialist in town, we don't, we go to Atlanta, we have ten specialist that we see, so we are back and forth, so you have to think about the gas and food and overnight stays," says Bedore.

The financial burden adds up. Which is why she started the Williams Syndrome Family of Hope, a national non-profit organization that raises money for research and families in need."

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Coming up on 20/20 February 9

Coming up on 20/20 February 9: Born to Smile | 20 20 News:

"Born to Smile: When a baby is born with Williams Syndrome, even the doctors don't always recognise the symptoms. The most striking characteristic is their extreme friendliness. They were born to smile. But that smile is not always returned when their loving nature is taken advantage of. Emma Keeling meets two inspirational women who keep smiling no matter what the world throws at them."

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Psychopathological and behavior impairments in Williams-Beuren syndrome

Psychopathological and behavior impairments in Williams-Beuren syndrome: the influence of gender, chronological age, and cognition. | World Intelligence Network:

"For specific cognitive abilities, those cognitive functions characteristic of the classic WBS cognitive profile (a strength in verbal skills and a weakness in spatial skills) related to significantly greater internalizing difficulties. Future studies should explore underlying genetic and neurological differences in individuals with WBS in order to help explain the variability in psychopathological and cognitive functions."

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Lincoln County Record » Cayson’s Disney Wish Granted

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.”"

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Absolute Pitch in Williams Syndrome

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."

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

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."

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

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."

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

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."

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Announcement from Australian Williams Syndrome Forum - NSW Snug Retreat

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. "

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