YouTube - Chris Young at Vanderbilt Williams Syndrome Camp

YouTube - Chris Young at Vanderbilt Williams Syndrome Camp

Very nice of Chris to perform live for the gang!

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.

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."

Dispatch Interview - How's Your News? on Vimeo

Dispatch Interview - How's Your News? on Vimeo:

"HYN reporter Jeremy Vest gets a rare interview with the nations most successful independent band, Dispatch."

Jeremy Vest is one of several reporters on the upcoming MTV show, How's Your News. Jeremy has Williams Syndrome.

Louisville Benefit for Williams Syndrome Association

Thursday: Benefit for Williams Syndrome Association | courier-journal | The Courier-Journal:

"Check your diets at the door and enjoy a sampling of 10 desserts to raise funds for the Williams Syndrome Association. The all-day benefit will be from 10 a.m. to 10 p.m. Thursday at Sweet Surrender Dessert Cafe in Crescent Hill.

Williams Syndrome is a rare genetic disorder characterized by physical and developmental disabilities. It occurs in about one out of every 7,500 births.

During the day a 10-inch cake and other prizes will be raffled, with proceeds to benefit the association."

Family struggles to save child

malvern-online.com - Family struggles to save child:

"The family received news that Trinity was diagnosed with a condition that many doctors had never seen. Trinity has Williams Syndrome that has caused her to have a rare and very severe heart condition, Familial Arteriopathy with Associated Pulmonary and Systemic Arterial Stenosis.
Every artery in Trinity’s little body is three to five times smaller than normal. There is no known treatment in the United States at this time. Only one case of this condition has been recorded in medical history and it was reportedly not as severe as Trinity's condition."

Trenton Williams makes a big impact

Trenton makes a big impact:

"Trenton Williams, 12 has made a big impact on several lives. The 6th grade special needs patient recently went into kidney failure. Whether he's playing the piano, riding his bike or jumping on a trampoline. Trenton Williams always has a smile on his face. Little Trenton was born with a rare genetic disorder known as Williams Syndrome.
Last month things got worse when Trenton went in for a routine biopsy. The family learned less than 10 percent of his kidney was functioning. The Turner Elementary 6th grader was going into kidney failure.
When word got out that Trenton needed another kidney his mom Danielle was flooded with calls from people wanting to help including some city council members, school officials and friends.
Fortunately Danielle doctors called her on her birthday to let her know she and Trenton have matching blood types. In the next three months they will go to an hospital in New Orleans and make his dream a reality."

The Official Parent's Sourcebook on Williams Syndrome

The Official Parent's Sourcebook on Williams Syndrome:

"This book has been created for parents who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells parents where and how to look for information covering virtually all topics related to williams syndrome (also Beuren Syndrome; Early Hypercalcemia Syndrome with Elfin Facies; Elfin facies syndrome; Elfin Facies with Hypercalcemia; Fanconi type idiopathic infantile hypercalcemia; Hypercalcemia-Supravalvar Aortic Stenosis), from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on williams syndrome. Given parents' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated)."

Those Williams Syndrome Eyes...

Eyes: A New Window on Mental Disorders: Scientific American:

"Riby and Hancock point out that the underlying cause of the hyper-sociability of Williams syndrome is not yet known. Why do people with Williams syndrome spend so much time looking at eyes? It could be that people with Williams syndrome find it harder to control their gaze behavior and hence cannot inhibit excessive staring. Alternatively, they might take longer to process and understand the information they are accessing from the eyes. In addition, the authors point to recent work showing deficits in executive function and working memory tasks in Williams syndrome highlighting the possibility of attentional control problems in such patients. This discovery suggests the possibility that people with Williams syndrome find it difficult to disengage their attention from faces. Because attention shifting deficits have also been reported for autism, Riby and Hancock propose that the relationship between the prefrontal cortex (involved in inhibiting behavior) and the amygdala (involved in emotion processing) may be crucial in both of these neuro-developmental disorders."

Expectations, Anticipation and Change: One Mom Details her Life with a Williams Syndrome Child

Louie and Ace: Vowels and Consonants:

You know, the funny thing about Williams Syndrome, which really isn't funny at all. Why do we use such stupid language sometimes? Anyway, the not so funny thing about Williams Syndrome is that I'd never heard of it. Ever. In my life. So, when Louie was diagnosed, it could be anything I wanted it to be. Oh, here on the Internet, it says mild to moderate retardation, so of course I deemed that Louie would be the "mild" case. Many kids with Williams Syndrome are musically gifted. I envisioned Louie playing with the Philharmonic or touring the world singing in 100 different languages. I read children with WS were extremely extroverted, conversational and friendly and loved people. Making friends at every corner; the adored child.

Okay, so it's not turning out that way so far. I know, I know, there's still time. But he is very atypical for someone with WS. He's what has been called "low-functioning". He is not friendly. He's not showing any musical talent. He doesn't speak a single word or even attempt words. He babbles, 'a' and 'e' and even that is rare. Who would have ever thought vowels and consonants would mean so much to me? His speech therapist sent home a note this week saying she heard the sound "muh." Do I celebrate? Yes, I suppose I do.

He has been diagnosed with autism. Point here is not poor me, as much as I realize it may sound. The point is that every moment, I'm learning more about what it means to be the mother of Louie. And who he really is. And it doesn't matter how many labels we put on him and how much I read about these labels. He'll still be Louie. But a Louie that tugs a little harder on my metaphorical, yet vulnerable, heart.

Balancing Faith and families - Williams Syndrome Children in Church

Balancing Faith and families - TwinCities.com

A very informative article on how one church has learned to include a WS child in their life.

Getting Ready for School? Teacher Aids for Kids with WS

Click here for a link to the WSA page for educators...

"As educational psychologist Eleanor Semel says, 'Educators are confused because the Williams syndrome child tests like the retarded child, talks like a gifted child, behaves like a disturbed child, and functions like a learning-disabled child.' Each of these terms has a specific meaning in the world of special education, yet none seems to fit the characteristic peaks and valleys in Williams syndrome. The result is that children with Williams syndrome are generally not well served by schools."

WZTV FOX 17/Nashville - Video on Williams Syndrome Music Camp at Vanderbilt

WZTV FOX 17/Nashville

An interesting account of Vanderbilt's music program seeking to help WS folks.

The Neurocritic: Broken Social Scene

The Neurocritic: Broken Social Scene:

The Neurocritic reviews a new study on gaze analysis that compares WS subjects to typically developing and autistic subjects.

"The WS subjects viewed faces for a longer duration than did their respective controls. Specifically, the WS group spent more time viewing the eyes, but not the mouth. Conversely, as has been demonstrated in previous studies, the participants with autism spent significantly less time looking at faces (eyes in particular) than did their controls.

Whilst individuals with autism spent a significantly smaller proportion of time than typical fixating on characters’ eyes (17% of face gaze time), those with WS spent significantly longer than typical fixating on the same region (58% of face gaze time). Visual attention to the eyes may be implicated in other divergent abilities in face perception, such as the interpretation of gaze cues and expressions, where individuals with WS are more proficient than those with autism."