Tuesday, February 28, 2012

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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Tuesday, February 7, 2012

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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Friday, February 3, 2012

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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Wednesday, February 1, 2012

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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Monday, January 16, 2012

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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Wednesday, January 11, 2012

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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Friday, January 6, 2012

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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Tuesday, December 6, 2011

Ex-worker gets prison for stealing from client - Toledo Blade

Ex-worker gets prison for stealing from client - Toledo Blade:

"John Abood was the perfect victim, his sister said.

Born with Williams syndrome, Mr. Abood has a very low IQ, trouble with the most basic math, and is very friendly and trusting — all symptoms of the rare genetic disorder.

So, when his siblings realized the 59-year-old man had no money in his checking account and extensive overdraft fees, they knew someone likely had taken advantage of Mr. Abood’s trust.

A former Anne Grady Center employee once assigned to help Mr. Abood buy his groceries and pay his bills was sentenced Monday in Lucas County Common Pleas Court. Gary Smotherman, 39, of 146 Rosalind Pl. was sentenced to 17 months in prison and ordered to pay $6,500 in restitution."


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Friday, November 25, 2011

DBHS Gives Student a Special Gift - Diamond Bar, CA Patch

Calvin, 17, has Williams Syndrome, a rare neurodevelopmental disorder. Set to graduate from DBHS next year, Calvin spent his high school years as water boy for the football team, and was also involved with track and field. During the school’s recent Homecoming game, Calvin received a big surprise: the athletic department gave him his own letterman jacket.

“Coach Ryan Maine and trainer Stacy Camou got together and gave him a letterman jacket right before the game, when the football players were announced with their parents and standing on the sideline,” Cloris said. “They called us up and placed us in the middle of the field and said some wonderful things about Calvin. It was so touching and wonderful, and he was so excited and happy.”

Although Calvin couldn’t play or compete, being part of the team in some capacity was an enriching experience.


DBHS Gives Student a Special Gift - Diamond Bar, CA Patch:

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