Tampa Bay Family on Fox News

Debby Johnson and her son, who has Williams Syndrome, joined Good Day to discuss the condition and this weekend's fundraiser to raise awareness.

Educating on Williams - MarshallIndependent.com | News, Sports, Jobs, Community Info. - Marshall Independent

Educating on Williams - MarshallIndependent.com | News, Sports, Jobs, Community Info. - Marshall Independent

When her daughter Mandi Mahoney was a little more than a year old, Penny Hastings of Marshall figured there was something wrong.

"She wasn't crawling, she didn't wave 'bye-bye,'" Hastings said. Mahoney also had a heart murmur and was taken to a pediatric cardiologist in the Twin Cities where it was learned she had Williams Syndrome, a rare condition.

This week marks the first-ever Williams Syndrome Awareness Week nationwide. Hastings said getting the word out would assist them in helping people with Williams and their families by educating communities about the abilities of those with the condition and help them to achieve their full potential.

Stanford scientists learn how brains process faces

Stanford scientists learn how brains process faces

The team ran functional magnetic resonance imaging scans on 16 adults with Williams syndrome and found their brains show an enormous amount of activity in the fusiform face area, which processes information about faces.

"Adults with Williams syndrome are also devoting about twice as much of their fusiform cortex to processing faces, compared to healthy adults," said Golijeh Golarai, a research associate in psychology. "It is a pretty significant difference."

Golarai is the lead author of a paper published this week in the Journal of Neuroscience that outlines the researchers' findings.

Because people with Williams syndrome are all missing the same genes, the researchers are using their findings to ask whether the heightened brain activity they've detected is rooted in their subjects' genetic makeup.

And the answers – which the researchers hope will come from more experiments they're planning – can help determine the degree to which genetics and experience shape social behavior in Williams syndrome, making a contribution to the "nature vs. nurture" discussion.

Youngstown News, Learn about Williams syndrome

Youngstown News, Learn about Williams syndrome

If you mention Williams syndrome to someone you know, chances are they’ve never heard of it.

It’s a rare genetic condition, occurring about once in every 10,000 births, that causes medical and developmental problems.

The Williams Syndrome Association in Troy, Mich., plans to make the public more aware of Williams syndrome and has launched a weeklong national awareness campaign that runs through Saturday that will feature fund-raising walks and other events across the country.

Two local families with children who have Williams syndrome would like to see a local awareness project developed and are interested in organizing a Mahoning Valley event in the future.

Justin Frease, son of Linda and David Frease of Boardman, was diagnosed in 1986 when he was 6 months old.

“I can tell you, back then, no one even knew about it,” said Linda Frease.

“I was overwhelmed,” she said, explaining that she didn’t know anyone else who had Williams syndrome and found the local medical community unable to provide references. Getting in touch with the national organization proved to be a major help, she said.

Prom is a triumph for Diamond

Prom is a triumph for Diamond

This moment, a dream for teens everywhere, was especially triumphant for Diamond.

She's struggled with Williams syndrome, a rare genetic condition that causes medical and developmental problems, all her life.

“She's been through a lot, more than you could ever imagine,” said her mother, Barbara Ellison of Hikes Point. “Her being here is a blessing.”

Williams syndrome occurs once in every 10,000 births and is caused by the deletion of a certain region of chromosomes. It often causes a narrowing of the heart and blood vessels, muscle and bone problems and some degree of intellectual disability.

Barbara Ellison said tests suggest that Diamond's condition is more severe than most.

At 10 months old, she had open-heart surgery. As a baby, she had chronic urinary tract infections and asthma.

She can't read or write, and she needs constant supervision.

For Diamond, the particulars of her condition are abstractions, hard to grasp and remember.

She does know that somehow, her body fails her.

“My heart,” Diamond said, patting her chest. “It keeps hurting every single day.”

Valley moms bring awareness to Williams Syndrome

Valley moms bring awareness to Williams Syndrome:

"For Nubia Garza her daughter Edie is her world, but when she found out her daughter had a rare disease called Williams Syndrome, her whole world turned upside down."

Sorry, the video would not imbed but you can click the link and watch from the news site.

Modesto child's rare syndrome teaches parents to take it step by step

Modesto child's rare syndrome teaches parents to take it step by step - Education - Modbee.com

It's a high point in the school day for the 11-year-old fourth grader, who is put in mainstream courses when possible and in a class for developmentally delayed students the rest of the time. And it brings a smile to the face of Julie Oliveira, Audrey's special day class teacher of two years.

"She's come a long way," Oliveira said. "Before, she wasn't able to work in groups or stay on task. Now she can. And she's a hoot. She's definitely fun to have in class."

That delightful personality and expressive speech defines Audrey, the oldest child of Dean and Sabrina Hull of Modesto. She has Williams syndrome, a rare genetic condition characterized by medical problems, developmental delays and learning disabilities. But such children also have striking verbal abilities, highly social personalities and an affinity for music.

"There are a lot of silver linings," said Sabrina.

Because the condition is so rare — about one in 10,000 births — not many people know about it. So today begins the first national Williams syndrome awareness week. The Hulls will hold a gathering Saturday for other families in Northern California affected by the syndrome.

Read more: http://www.modbee.com/2010/05/09/1159777/modesto-childs-rare-syndrom-teaches.html#ixzz0oF5QoteM

Williams Syndrome Awareness Week on Fox News

An interview with Madison's mom... too bad they did not talk more to Madison!

Walk for Williams Awareness

Walk for Williams Awareness

The FOX 13 Care Force is to proud support the “Walk for Williams Awareness” on Saturday, May 15 at 9 a.m. at the St. Petersburg Pier.

Williams Syndrome is a rare genetic disorder that is present at birth and can affect anyone. All money raised will support critical research initiatives and programs for individuals with Williams Syndrome.

FOX 13’s Consumer Lawyer’s son Chase has Williams Syndrome. Eric is a proud parent and an advocate for the Williams Syndrome Association.

Facing the future

Facing the future

Riley is your typical kindergartner: a social butterfly, curious about the world around her and happy as can be on a perfect spring evening playing with her family in the backyard.

But even as she chases Jacob playing tag, Riley’s parents Scott and Becky explain the struggles Riley and the family have had to work through in her short six years, and look forward to the future.R

Riley Henson has Williams Syndrome, a rare genetic disorder caused by the deletion of the number seven chromosome resulting in the loss of more than 25 genes.

Walking for Williams

Walking for Williams / People News / News

Jason Anderson, 25, and Matthew Pow, 24, have lots in common.

Both love sports and music, enjoy their jobs and are good friends. They also share something else – a rare, genetic disorder called Williams Syndrome.

It’s virtually unknown to the general public, educators and many doctors. Yet it’s touched families in the local area, and Jason and Matthew are participating with them Saturday, May 15, in the first-ever Walk for Williams.

“We’re hoping to raise at least $2,000,” said Jason’s mom, Malia Anderson of Chantilly’s Armfield Farm community. “But the whole purpose is to raise awareness, even more than funds. People can just come out, walk and have fun.”

Matthew’s mother, Laurie Pow of Fairfax, near Burke Centre, agreed. Her son was diagnosed at 6 months old. “No one knew anything about it,” she said.

Now, Chantilly is among more than 35 communities across the U.S. participating in the inaugural Williams Syndrome Awareness Week, May 9-15. Area residents, plus honor and SGA students from Chantilly High and Lees Corner Elementary, will walk.

Disability can't stop her

Disability can't stop her :: Naperville Sun :: Lifestyles

Eighteen-year-old Tricia Haas of Naperville doesn't define herself by her disabilities. Instead she uses her unique gifts and charm. Haas has Williams syndrome, which commonly results in developmental delays, learning disabilities and potential medical problems. Tricia also wants to help raise awareness about the rare genetic disorder.

"I don't always understand things at first. So people have to explain them to me," said Tricia, who was diagnosed shortly after birth when she underwent heart surgery. "I explain this to people, and they understand what it's like to have my disability. It doesn't make me that different than other people."

Williams Syndrome in an Adult. Diagnosed at 57 years old.

Williams Syndrome in an Adult. Adrian J. McKenna. 2010; Journal of Cardiac Surgery - Wiley InterScience

We report a case of a diagnosis of Williams syndrome in a 57-year-old male referred for cardiac surgery with a presumptive diagnosis of aortic valvular stenosis and ascending aortic aneurysm, supravalvular stenosis being first suspected during surgery. Williams syndrome was subsequently confirmed via genetics testing. In patients presenting with an ascending aortic aneurysm, developmental delay, and with poorly visualized coronary arteries during angiography, the diagnosis of supravalvular aortic stenosis or Williams syndrome should be considered. (J Card Surg 2010;25:339-342)

A Genetic Drive To Love, Yet Distanced By Differences : NPR

A Genetic Drive To Love, Yet Distanced By Differences : NPR

This makes it difficult not only to hold a job as an adult, but also, Pober says, to fulfill one of their most intensely felt needs: because they are compulsively social they yearn to be surrounded by dear friends.

"To me it's one of the heartbreaks, the sadnesses of Williams syndrome," Pober says. "Most are rather socially isolated."

Pober says this is because in order to get to know someone you have to do turn taking in dialogue. "You listen to what I say, I listen to what you say, and then we build on that," Pober says. "But to sustain the attention and build on the dialogue enough to really get to know someone is hard for many folks with Williams syndrome."

Pober says few people with William's syndrome marry, and even fewer have children. But this may be changing, Pober says. Now there are new social training programs for people with Williams. These new treatments might ultimately transform the long term prospects of people with William.