Tuesday, June 7, 2016

Robbie's First Flight

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

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,

Thursday, October 29, 2015

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

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.”


St. Maries boy with disorder finally gets in the game

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.


Wednesday, July 22, 2015

Ottawa Sun articles

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

Sunday, October 12, 2014

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!)

Friday, September 7, 2012

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.

Friday, August 17, 2012

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.”

Tuesday, June 19, 2012

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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Friday, April 20, 2012

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.

Tuesday, April 3, 2012

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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