Thursday, February 5, 2009

"How's Your News," New MTV Show, First Review

Ellen Gray: MTV debuts a different kind of 'News' | Philadelphia Daily News | 02/05/2009

But it's Vest, a 20-year-old with Williams syndrome whose mother says he's "always been what we like to call 'severely unusual,' " who's the show's star.

Williams, a genetic condition associated with, among other things, outgoing personalities and good verbal skills, may have given Vest a leg up in a frothy world where one minute you're palling around with John Stamos and the next you're doing red-carpet interviews at the Grammys.

Friday, January 30, 2009

Sean Tuck Goes to Clemson University

PRO-Parents_Reach_Out_Newsletter_Winter_2008_-_2009.pdf (application/pdf Object)

Sean, 21 of Greenville, has Williams syndrome — a rare genetic condition, estimated to occur in 1 of
every 7,500 births, which causes medical and developmental problems. But Sean gives very little indication
of someone who is labeled “intellectually disabled.”
Bright, funny, and friendly, Sean is one of three area charter students in Clemson’s new LIFE program.
Sharon Sanders, program manager, said the program is a college school-to-job transition for these
youths, just like all high school graduates...
Clemson University students are already lining up to provide support for the program. Education majors
will assist with delivering lessons, developing curriculum, and evaluating progress. Other undergraduates
will serve as LIFE Mentors and will accompany the Clemson LIFE students to sporting events and theater
presentations, work out with them at the gym, go to movies, and share meals on or off campus. Even the
student government is currently considering options like which committees the students could serve on.
“This is a very exciting opportunity for us to help these students out and make a difference in their future
while also contributing to a more inclusive campus environment,” said one Clemson student, “and to be
part of something bigger than ourselves.”

Tuesday, January 27, 2009

Sociability Traced to Particular Region of Brain by Stanford Scientists - MarketWatch

Sociability Traced to Particular Region of Brain by Stanford Scientists - MarketWatch:

"STANFORD, Calif., Jan 27, 2009 (BUSINESS WIRE) -- People with a genetic condition called Williams syndrome are famously gregarious. Scientists, looking carefully at brain function in individuals with Williams syndrome, think they may know why this is so. The researchers at the Stanford University School of Medicine showed that parts of a particular brain region known as the amygdala react more powerfully in Williams syndrome patients than in developmentally normal subjects--or in subjects with delays in development not caused by Williams syndrome--when exposed to facial expressions conveying positive emotions.
The study will be published Jan. 28 in the Journal of Neuroscience. Biopsychologist Brian Haas, PhD, a postdoctoral researcher at Stanford, shares first authorship of the study, with Debra Mills, PhD, of Bangor University in Gwynned, Wales. Haas conducts research in the laboratory of Allan Reiss, MD, the Howard C. Robbins Professor of Psychiatry and Behavioral Sciences at Stanford, who is the paper's senior author. The work is part of an ongoing multicenter collaboration."

Sunday, January 18, 2009

Telluride Inside... and Out:MacKenzie Mansour skis with TASP

Telluride Inside... and Out:MacKenzie Mansour skis with TASP:

"Fourteen year old MacKenzie Mansour, from Lone Oak, TX, has been skiing with Telluride Adaptive Sports Program this past week. MacKenzie has a rare genetic condition known as Williams Syndrome. That has not stopped her from enjoying our mountain. I had the privilege of skiing with MacKenzie for three days. The progress was inspiring to observe. The attached video shows the increase in confidence between her first and third runs in Ute Park her second day out. Hurray for you, MacKenzie."

Monday, January 12, 2009

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.

Thursday, January 8, 2009

Atypical right diaphragmatic hernia (hernia of Morgagni), spigelian hernia and epigastric hernia in a patient with Williams syndrome: a case report - 7thSpace Interactive

Atypical right diaphragmatic hernia (hernia of Morgagni), spigelian hernia and epigastric hernia in a patient with Williams syndrome: a case report - 7thSpace Interactive:

"These multiple hernias suggest that patients with Williams syndrome may have some connective tissue disorder which makes them prone to develop hernias especially associated with those parts of the body which may have intracavity pressure variations like the abdomen.

Diaphragmatic hernia may be the cause of chest pain in these patients. A computed tomography scan helps in early diagnosis, and laparoscopic repair helps in prevention of further complications, and leads to quick recovery especially in patients with learning disabilities.

In the presence of significant comorbidities, a less invasive operative procedure with quick recovery becomes advisable."

Sunday, December 21, 2008

Arkansas WS Boy Gets Free Shopping Trip

NWAnews.com :: Northwest Arkansas' News Source:

"Anthony has some obstacles to overcome should he ever become a cop. He was born with Williams Syndrome, a genetic condition that includes problems and abnormalities throughout his body.

With Anthony, the shopping trip was going to be a bit of a show, and any officer with him was going to be entertained. Rumor had it several officers had their fingers crossed they would be with Anthony. Weimer didn't say much about his pairing; mostly he just smiled.

Anthony entertained the salespeople, singing happy birthday to one who was 'just a little bit older than 14,' and introducing himself to almost everyone he met, except for the ones he already knew from last year, who he addressed like old friends."

Friday, December 19, 2008

How genes can contribute to hypersocial behavior in people with Williams Syndrome

How genes can contribute to hypersocial behavior « Biomarker-driven mental health 2.0:

"In their current paper, Sarpal and colleagues measured brain activity as well as correlations of activity (connectivity) between brain regions as patients with WS passively viewed visual objects (faces and houses). They report that connections from early visual processing areas (fusiform and parahippocampal gyrus) in WS are actually weaker to the frontal cortex and amygdala. Since activation of the frontal cortex and amygdala are associated with inhibition and fear, it may be case that the weaker connections from early visual areas to these regions gives rise to the type of gregarious and prosocial (a lack of fear and inhibition) behavior seen in WS. In further pinpointing where in the brain the genes for WS might be causing a developmental change, the authors point to the ventral lip of the collateral sulcus, an area situated between the fusiform and parahippocampal gyri. This may be the spot to more closely examine the role of genes such as LIMK1 - a gene that participates in the function of the actin cytoskeleton (an important process in synaptic formation)."

Tuesday, December 16, 2008

The part-time parents who help struggling families to cope with a labour of love - Times Online

Times charity: Action for Children: The part-time parents who help struggling families to cope with a labour of love - Times Online:

"This is where Action for Children, a charity being supported by The Times Christmas Appeal, comes in. In one of many shared-care schemes that the charity operates throughout Britain, David and Wendy West, from Oakdale, near Blackwood, South Wales, now look after Dion for a weekend every fortnight, offering Ms Evans a respite from the demands of his constant care. “He just becomes part of the family every other weekend,” Mrs West, who has two daughters of her own, said. “We go walking the dogs, to the cinema, out for a picnic or to church on a Sunday. Whatever we are doing, he fits in.”

Having looked after Dion for seven years, the Wests are familiar with his medication and dietary needs, much of which fills the little Spider-Man suitcase that he brings with him when he comes to stay. They became interested in shared care as a less committed option after considering long-term fostering, and now look after Sian, an 18-year-old girl with Williams syndrome, a rare condition that results in learning and developmental problems."

Saturday, December 13, 2008

Clare's Journey: Reality

Clare's Journey: Reality:

"I don't know if Clare realizes yet how she is different from other children. But I do, and it hurts."

Wednesday, December 10, 2008

SpringerLink - Journal Article

SpringerLink - Journal Article:

"In conclusion, our data represent the largest collection of individuals with Williams syndrome who underwent cardiac catheterization and/or operation. The data suggest that children with Williams syndrome and bilateral outflow tract obstruction have statistically and clinically significantly higher mortality associated with catheterization or operation."

Monday, November 3, 2008

Teenager overcomes obstacles to play cymbals in high school marching band

One evening in late September, Kevin and his mother, Lynn James, sat in the stands, near the band as usual, when bandmaster Brown walked toward them.

"He asked if I thought Kevin would like to join the band next Friday and play the cymbals," Lynn said.

She could barely speak, she was so emotional and excited. Her son was overjoyed.

The next Friday, Kevin put on a band uniform and walked slowly - because he is partially paralyzed - onto the field to participate in one song - "The Star-Spangled Banner."

He hit the cymbals in perfect time.

Oct. 17, marked his third time playing the cymbals for the marching band. His mother wasn't the only one cheering for him in the stands.

Saturday, November 1, 2008

Party to connect Williams syndrome sufferers - Milford, MA - The Milford Daily News

Party to connect Williams syndrome sufferers - Milford, MA - The Milford Daily News:

"Ducharme, the mother of 2-year-old triplets, learned one of them had Williams syndrome about six months ago. The rare genetic condition causes medical and developmental problems.

In comparing Lucien to his two sisters, Ducharme said her son has developed more slowly. He just recently learned to walk and can only speak single words while his sisters can recite sentences."