Sunday, December 21, 2008

Arkansas WS Boy Gets Free Shopping Trip :: 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."

Tuesday, October 28, 2008

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.

Monday, October 27, 2008

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."

Tuesday, October 21, 2008

Family struggles to save child - 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."

Friday, October 3, 2008

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)."

Tuesday, September 16, 2008

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."

Tuesday, August 26, 2008

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 -

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."

Sunday, August 10, 2008

Friday, August 1, 2008

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."

Thursday, July 31, 2008

State-funded services help child | Twin Cities Daily Planet | Minneapolis - St. Paul

State-funded services help child | Twin Cities Daily Planet | Minneapolis - St. Paul:

"Several days ago, my twelve year-old son, Erich, sat in front of our church congregation and played the guitar to the tune of “He’s Got The Whole World In His Hands.” It was one of those hand-on-your-heart moments, and it simply took my breath away. To many it would have seemed a normal, everyday occurrence, but for those who know Erich, they understood what it has taken for him to confidently strum a tune on a guitar.

Two days after his first birthday, Erich was diagnosed with Williams Syndrome, a genetic disorder affecting the seventh chromosome. As a result of this syndrome, Erich has many developmental disabilities, especially fine and gross motor as well as speech delays. However, thanks to state-funded human services, Erich has developed skills that have greatly enriched his life."

Family Looks for Help in Building Addition Onto Home for WS Son

CBS 7 - Your Eye on West Texas

Trace sufferes from Williams Syndrome, a genetic disorder which formed his arteries too small; making it difficult to breath and even harder to play.

"We're supposed to limit his activity and its hard to do with having older brothers and wanting to play and stuff."

The Covington's home is also a challenge. Trace doesn't have a bedroom and in between playing the piano and riding piggy back on his big brother's bike, Trace has few places to recoup.

"We're just wanting to have an environment so he can go and have fun instead of going outside and running and playing and stuff."

So, Trace's parents contacted the Make A Wish Foundation, in hopes of giving their son his first bedroom.

"It tears at our hearts that he's having to do without."

Unfortunately, just when they thought Trace's wish was granted, Make A Wish informed them otherwise.

Wednesday, July 30, 2008

Ipswich’s Hanwell a true Special Olympics champion - Ipswich, MA - Ipswich Chronicle

Ipswich’s Hanwell a true Special Olympics champion - Ipswich, MA - Ipswich Chronicle:

"Alyssa Hanwell loves to roller skate — in competition, only, though.

The longtime Special Olympics competitor typically puts away the wheels when the training season and state Special Olympics are past."

Vocabulary Abilities of Children With Williams Syndrome: Strengths, Weaknesses, and Relation to Visuospatial Construction Ability -- Mervis and John 5

Vocabulary Abilities of Children With Williams Syndrome: Strengths, Weaknesses, and Relation to Visuospatial Construction Ability -- Mervis and John 51 (4): 967 -- Journal of Speech, Language,:

"Conclusions: Concrete vocabulary is a relative strength for children with WS; relational vocabulary ability is very limited and is at about the level of visuospatial construction ability. Accurate determination of group comparison results depends on stringent group matching."

Tuesday, July 8, 2008

Oak View woman gets chance to sing with Wynonna Judd : Lifestyle : Ventura County Star

Oak View woman gets chance to sing with Wynonna Judd : Lifestyle : Ventura County Star:

"Born with a rare genetic condition, Trieana Moon is nonetheless honing her passion for music with her own CD and singing onstage with her idol, Wynonna Judd.

'It was my dream come true to see her and perform with her; it was amazing,' said Moon, 33, of Oak View, who sang 'Amazing Grace' with Judd this spring at Ryman Auditorium in Nashville, Tenn.

'I'd like to go back to Nashville and see Wynonna and perform with her again,' Moon said. 'She's got a voice like an angel. That would be my greatest joy, to work with a beautiful country singer like her because she's my idol.'

Moon has Williams syndrome, a condition of unknown origin that causes mental retardation and heart abnormalities and shares some similarities with autism."

Family Prepares to Adopt Williams Syndrome Girl from Taiwan

The Becks Family

Best wishes to the Becks!

Teresa Posts on Her Williams Syndrome Barbecue

Clare's Journey: Williams Syndrome Barbecue

Saturday, June 21, 2008

Thursday, June 19, 2008

UD professor examines spatial deficits in Williams syndrome children

UD professor examines spatial deficits in Williams syndrome children:

"“We believe that the spatial distortions we see in drawings and other visio-spatial construction tasks by people with Williams syndrome do not reflect corresponding distortions in their perception of the world. We will argue that this syndrome leaves spared a number of spatial cognitive subsystems, including object recognition and identification, biological motion perception and spatial languageĊ and that some of the most profound deficits are not due to abnormal architecture, but to small misadjustments that culminate in large downward spiraling performance.”

One example of this, Hoffman said, is that persons with WS know that their drawings are not correct. The most common errors involved choosing an incorrect part and drawing it in an incorrect location. They can easily distinguish between correct and incorrect drawings of models, but they can’t do better when they try again, he said.

“Drawing or assembling parts to make a model is an extremely frustrating experience for them because they are aware of their poor abilities in this domain, and they usually resort to random changes in an effort to correct their efforts. However, the defect is not simply a problem with motor output either because they can trace drawings just fine. So their spatial deficits are not due simply to either problems in input (perception) or output (action) but to some cognitive processes in between. We are now trying to characterize the nature of these processes,” he said. "

Tuesday, June 17, 2008

Brothers' business ventures gaining national attention

The Hays Daily News

Jim Warren started WonderPaper by Jason about six months ago for his oldest son, Jason, who has Williams Syndrome.

"It's a business that he can work in," Jim Warren said. "It was born out of Erik's work."

The Warrens buy large sheets of WonderPaper, cut them into two smaller sizes and sell them to scroll saw artists, such as Erik Warren.

Thursday, June 5, 2008

Williams syndrome, the brain, and music

Salk Institute:

October 4, 2006

— La Jolla, CA —Children with Williams syndrome, a rare genetic disorder, just love music and will spend hours listening to or making music. Despite averaging an IQ score of 60, many possess a great memory for songs, an uncanny sense of rhythm, and the kind of auditory acuity that can discern differences between different vacuum cleaner brands.

A study by a multi-institutional collaboration of scientists, published in a forthcoming issue of NeuroImage, identified structural abnormalities in a certain brain area of people afflicted with Williams syndrome. This might explain their heightened interest in music and, in some cases, savant-like musical skill.

Monday, June 2, 2008

Knowing looks: Using gaze aversion to tell when children are learning -

ESRC: Knowing looks: Using gaze aversion to tell when children are learning:

"She says that, from the point of view of the teacher, gaze aversion is a positive sign. A child who is doing it is likely to be developing their understanding and is what Dr Doherty-Sneddon terms an “improver”. By contrast, children who are not improving their performance, or who are regressing, use gaze aversion less often.

Keeping an eye on gaze aversion is especially valuable for teachers and social workers who are trying to understand the mental state of people with: Autistic spectrum disorders (ASD); Attention Deficit Hyperactivity Disorder (ADHD); or Williams Syndrome, the genetic condition popularly called Cocktail Party Syndrome. “People with Williams Syndrome have been characterised as being hypersociable and using excessive amounts of eye contact, which is an interesting contrast to people with autism. Our gaze aversion work promises to provide new and important insights into the mental and social functioning of such groups” says Dr Doherty-Sneddon."

Sunday, June 1, 2008

Locals compete in 5K race to benefit Williams Syndrome

Locals compete in 5K race to benefit Williams Syndrome | | Coshocton Tribune

"COSHOCTON - Thunderstorms whisking through the area Saturday morning did not deter approximately 70 people from taking part in the third annual Brittany's 5K Run/Walk Benefit at Lake Park."

Saturday, May 31, 2008

New book chronicles family's challenges raising daughter with Williams Syndrome

Community Press - Book chronicles family's challenges:

"'Another Day, Another Challenge,' Strebe's first published work, is the story of a girl with Williams Syndrome and the story of a family that dealt with the challenges - it is the story of Strebe's youngest daughter Michelle."

Thursday, May 22, 2008

Inside The White House: Thoughtful Gifts

Inside The White House: Thoughtful Gifts

Jenny has an encouraging post about some presents that came for her little WS guy.

Friday, May 16, 2008

Williams Syndrome Man with Winning Smile Makes Work Easier!

Amador Ledger Dispatch:

"Steven Beuving was born with Williams Syndrome, a rare genetic condition that causes medical issues and developmental problems. This has done little to slow him down over the years - particularly in the social department. Beuving has an unusual knack for striking up conversations with people, talking about everything from music and current events, to his own hobbies like hiking, fishing and bike riding. "One of my biggest interests is traveling," Beuving said. "I really like talking to other people about where they've traveled to. I collect travel guides to different places I'd like to visit. One of my favorite places to travel right now is the Pacific Northwest; although my best trip so far has been a cruise to Alaska."

When Beuving approached The Arc of Amador and Calaveras nine years ago looking for employment, the job coaches realized his natural friendliness and gift for connecting with people made him an ideal candidate to be a customer greeter at Wal-Mart. "Steven has had a great track record in our program," observed Ileshia Knigge, a job coach at The Arc. "He's developed a lot of friendships at his job, both with customers and his fellow employees; and the Wal-Mart managers say he's an absolute pleasure to work with."

Knigge added, "One of the things that make Steven so great at his job is that he has a real gift for remembering names and faces. He always reads the newspaper, and if he sees a customer come in who's been in a wedding or anniversary announcement, he usually remembers and offers them a congratulations when they come in. He's just got the perfect style for that job. He's very respectful to the older customers, and he also knows how to be more casual with the younger people who come in. As far as our supported employment program goes, Steven is one of our greatest success stories."

Beuving will be the first person to agree that his job is tailor-made for his personality. "I really like getting to interact with people," he said. "It's a good feeling just to say hello and seeing how someone's day is going. I get to meet all kinds of different people and I'm lucky enough to have made a lot of friends."

Being the minister of Cornerstone Church in Ione, Beuving's father, Tony, is also no stranger to getting to know people - although Tony admits that when it comes to making friends, his son can be hard to keep up with. "Steven has gotten to know so many people through his job it's incredible," said his father. "It really seems like he's friends with half the county. From our family's perspective, it's been a good situation for him and Wal-Mart's been an excellent employer."

Thursday, May 8, 2008

Williams Syndrome Man Debuts New CD - Malden, MA

Manheim debuts Christian rock CD - Malden, MA - Malden Observer:

"Malden - Leif Manheim, a 44-year-old Malden resident who has Williams Syndrome, has completed a CD of 13 songs. To celebrate this achievement, he will perform a concert at the First Baptist Church of Woburn, located at 3 Winn St. in Woburn, on May 9, from 7 p.m. to 10 p.m.

Diagnosed as an adult, Leif exhibits many of the physiological and cognitive characteristics of a rare genetic developmental condition known as Williams Syndrome, which causes medical and developmental problems. Typical of individuals with Williams Syndrome, Leif loves music. He also happens to have perfect pitch, composes, improvises, and plays four instruments."

Tuesday, April 29, 2008

Tara Reflects on Helping Payton Make Her Way in This World

Our Journey: Heartache:

"Sunday we attempted church again. Sunday school always goes very well - and I am thankful for that. This Sunday I got out of my class earlier than Payton's (very unusual), so I was able to watch her thru the window. A teenager was helping Payton with the activity they were doing...I guess I should say 'trying to help Payton'. Payton was standing up so I would've guessed she would've been very active at this point....instead she was spaced off, mouth open - in her own world. She does that when she is either overstimulated or overwhelmed. Seeing her face like that kills me. Heartache.

Then, on to the worship service. I keep trying to take her - thinking eventually she will have a good experience. And, I do try to pay close attention to see when she's about to lose it or see when she's had enough. Payton was nervous as soon as we sat down, so I tried to sidetrack her with goldfish crackers. It worked for a second, but then the choir started to sing......there's got to be something about the organ and the piano. She screamed at the top of her lungs and covered her ears. We bolted out as fast as we could. It's obvious it hurts and I hate it for her. Heartache."

£10,000 for Deal or No Deal 'loser' - Money to Go To Hospital That Served Her WS Son

£10,000 for Deal or No Deal 'loser' - Birmingham Mail:

"MANY game show contestants dream of splashing out on a new car or a holiday.

Olga Orlandini, of Solihull, also set her sights on scooping a pot of cash - but for a very different reason.

In 2005, the 33-year-old lost her two-year-old son Gianluca to a heart condition brought on by Williams syndrome, a rare genetic disease.

'When Gianluca passed away, I would spend a lot of time watching daytime television including the Channel 4 show Deal or No Deal,' said Olga, who has two other children - Olivia, aged ten, and Massimo, 20 months.

'While Gianluca was at Birmingham Children's Hospital he was attached to a portable heart monitor so that it could be moved around with him.

'I wanted to raise £10,000 for the hospital, enough for two portable heart monitors.'

Olga applied to go on the TV game show, hosted by Noel Edmonds, where the contestants choose a box at random before eliminating 21 others containing values ranging from 1p to £250,000.

Olga said she had a 'disastrous' game and ended up walking away with just £5.

'I'd taken a picture of Gianluca on to the show and had chosen box 14 - his birthday,' she said.

'I was stunned when the box was opened and there was only £5 in it. I felt sick."

Although she didn't know it at the time, a viewer was so moved by Olga's quest that she rang Birmingham Children's Hospital pledging £10,000, stipulating that the woman who had appeared on the show must decide how the money was spent.

Monday, April 28, 2008

Ohio Community Helps the Williams Syndrome Association

Coshocton Tribune - - Coshocton, OH:

"COSHOCTON - Brittany's 5K Run/Walk Benefit will be Saturday, May 31, at Lake Park. Registration is 7:30 to 8 a.m. with the race starting at 8:15 a.m.

All proceeds benefit the Williams Syndrome Association. The event is named after Brittany Rogers, a local resident with the rare disease."

Saturday, April 26, 2008

Disability doesn't stop spirited teen - Pasadena Star-News

Disability doesn't stop spirited teen - Pasadena Star-News:

"PASADENA - Laura Betancourt is a typical teenager. She racks up cell phone minutes talking to friends and loves singing and donning her tap shoes.

The only difference between the 16-year-old Pasadena teen and her peers is her blindness.

Laura, an eighth-grader at John Marshall Fundamental Secondary School, suffers from Williams syndrome, a rare genetic disorder that weakened her immune system. She lost her vision eight years ago after complications from chicken pox.

Today, Laura will compete at the Junior Blind Olympics - pitting herself against hundreds of other athletes from California and across the nation in archery, rowing, soccer throw, goal ball, a 100-yard dash and the long jump."

Friday, April 25, 2008

Penny's Thoughts on Williams Syndrome

Penny is a Floridian and mom to a 4 year old boy with Williams Syndrome. She has done some great research on WS and how to get help. You can check out her mulitple blogs here:

View this  Blog Calcium Information
View this  Blog IEP Information
View this  Blog Keith Alan
View this  Blog What Is Williams Syndrome?
View this  Blog Information for Teachers
View this  Blog What Is PDD-NOS?
View this  Blog Research Information

Wednesday, April 23, 2008

Cracks in the Sidewalk Look Bigger Than They Appear

Ava's Garden:

Kim writes of the progress her granddaughter Ava is making:

"Ava loves to toddle on the sidewalk, all the way to the end-turn around-and do it all over again. Unfortunately, the poor baby doesn't dare to look down while walking. It makes me sad that she gets stuck on a benign crack in the sidewalk. She gets visibly agitated and cries. It's a simple fix. Pick her up, move her past the crack, and she's good to go. Visuospatial issues, indeed. And what missing gene is responsible for my granddaughter having to walk as carefully as someone who is 80 years old?"

Friday, April 11, 2008

Aversion, awareness, and attraction: investigating claims of hyperacusis in the Williams Syndrome phenotype

Dr. Levitin discuss some helpful observations on how people with Williams Syndrome hear.
The results of this study indicate that people with WS
present four unusual behaviors of auditory perception:
hyperacusis, odynacusis, auditory aversions,
and auditory fascinations. The hyperacusis might be
characterized as an early awareness of sounds that
are either too soft for others to hear or simply inconsequential
to others. Both odynacusis and auditory
allodynia create distress/discomfort in people with
WS, and together constitute aversion. Finally, we
documented that people with WS may show an intense
fascination for or attraction to certain classes of
sounds, often the same sounds of which they were
frightened at a younger age. Thus, the concepts of
aversion, awareness and attraction seem to characterize
the auditory anomalies observed in WS, and
may help to describe the WS phenotype, although we
note that reports of true hyperacusis were significantly
less commonthan of aversions and attractions.
The present study contributes significantly to a
clinical and conceptual understanding of auditory
abnormalities in WS. Because the genotypes in WS,
DNS and AUT are clearly defined, the study of these
distinct populations offers an unprecedented
opportunity to link genes, brain, and behavior. This
effort is greatly facilitated by the ability to document
such striking phenotypic differences as exist in
auditory function among the groups. Although the
precise mechanisms underlying the four auditory
anomalies in WS remain unknown, the present
paper documents the existence of abnormalities in
auditory perception which previous reports had
confounded. Ongoing work in our laboratories
focuses on the functional and structural neuroanatomical
components of these disorders, with the
goal of eventually understanding how genes, brain,
and cognition are linked. People with WS may provide
important clues to the neurogenetic basis of
cognition, perception, and complex behaviors.

Helping a Williams Syndrome Boy Get Dental Care | Local News:

"Josh has Williams Syndrome, a rare genetic disorder that causes medical and developmental conditions, including mild to moderate mental retardation or learning difficulties, a distinctive facial appearance and heart or blood vessel problems.

He had open heart surgery when he was only 1 year old, Jody Hegwood said.

'(Josh) has a hard time getting a regular dentist to see him because of his heart condition,' his father said.

So the Hegwoods bring Josh to the University of Iowa Center for Disabilities and Development for his dental care through a statewide program called Dental Care for Persons with Disabilities. The program, started in 1983, is administered by the Department of Pediatric Dentistry at the UI College of Dentistry, the UI Center for Disabilities and Development and the Iowa Department of Public Health.

Since its inception -- it was started by Dr. Arthur Nowak, a former pediatric dentistry professor at the University of Iowa -- the program has served more than 3,000 children and young adults.

'It's a program to meet the needs of families who would fall through the cracks,' said Gayle Gilbaugh, program associate and dental hygienist in pediatric dentistry."

Wednesday, April 9, 2008

Olga's a real inspiration! - Birmingham Mail

Olga's a real inspiration! - Birmingham Mail:

"AN INSPIRATIONAL woman who lost her little boy to a rare disease has been nominated for the title of Britain's Most Inspiring Fundraiser by her proud mum.

Less than three years ago Olga Orlandini, from Solihull, lost her two-year-old son Gianluca to a heart condition brought on by Williams syndrome, a rare genetic disease.

Since then she has fought tirelessly to gather £30,000 for various charities and to raise awareness of the disease."

British Students Help Support Young Family with Williams Syndrome Boy

Stockton pupils raise money for Bailey’s charity - Gazette Live

Pupils at Our Lady and St Bede School in Stockton, where Bailey’s grandmother Hazel Gallacher works as a cover supervisor, were so touched by his story they raised £240 for the Williams Syndrome Foundation.

Read the full article here.

Enlivening Lives! - Williams Syndrome Students in MA Share Their Skills and Joy

'They enliven people's lives' -

"Berkshire Hills is the nation's only private, post-secondary residential school serving students who have this combination of gifts and challenges.

'There are so many kinds of intelligence and so many ways to be productive,' said Executive Director Ljuba Marsh. 'This school allows people to thrive and serve their communities. They go out to nursing homes, senior centers and elementary schools to perform. They enliven people's lives.'

Of the 26 students enrolled at the school, many have a rare genetic disorder called Williams Syndrome, while others have Asperger's Syndrome, cerebral palsy, Down Syndrome, or visual impairments. The school's curriculum is music-focused but aims to strengthen academic skills as well as job readiness."

Thursday, April 3, 2008

Shall We Dispose the Disabled?

kerux noemata: Shall We Dispose the Disabled?:

From my personal blog: "I thank God that no one 'counselled us' out of the safe delivery of our special needs child! What would our life be without him?!"

Saturday, March 29, 2008

Dealing with Other People's Expectations

Erik Quinn: The Heart of a Family: Minimize:

Nancy writes and expresses some of the frustration felt by parents of kids with WS:

"Sometimes I get the impression that people think I am making this entire WS thing up.

All of it.

These days I focus on the positive while being fully aware of WS, and perhaps that is confusing to others. Perhaps that makes Erik's disability disappear to them. Unfortunately, perhaps the hard work we have done to help Erik achieve each milestone and Erik's daily struggles also disappear in their eyes."

Friday, March 28, 2008

Beyond nature vs. nurture: Williams syndrome across cultures

Salk Institute:

Identified more than 40 years ago, Williams syndrome occurs in an estimated one in 20,000 births worldwide. It arises from a faulty recombination event during the development of sperm or egg cells. As a result, almost invariably the same set of about 20 genes surrounding the gene for elastin is deleted from one copy of chromosome seven, catapulting the carrier of the deletion into a world where people make much more sense than objects do. Despite a myriad health problems and a generally low IQ, children with Williams syndrome are loquacious, sociable, and irresistibly drawn to strangers.

To determine the extent to which this behavioral profile is universal across culture, the researchers settled on two vastly differing environments: the United States and Japan, whose cultural differences are said to be aptly summarized in two proverbs: In America, “The squeaky wheel gets the grease,” while in Japan, “The nail that stands out gets pounded down.”

Using a questionnaire developed by Salk researchers, Bellugi and first author Carol Zitzer-Comfort, a professor at California State University in Long Beach, asked parents in the U.S. and Japan to rate the tendency of their child to approach others, their general behavior on social situations, their ability to remember names and faces, their eagerness to please other people, their tendency to empathize with others’ emotional states, and the tendency for other people to approach their child.

Despite the differences in upbringing, in both countries children with Williams syndrome were rated significantly higher in global sociability and their tendency to approach strangers than were their typically developing counterparts. But cultural expectations clearly influenced social behavior, since the sociability of normal American kids was on par with Japanese Williams syndrome kids, whose social behavior is considered out of bounds in their native country.

Goldmine of Research on People with Williams Syndrome

Daniel Levitin, Ph.D.

Not sure how I missed this! Levitin teaches here in Canada at McGill University. This page is full of written, audio and video reports of his findings.

The sidebar has a link to other scientists researching Williams Syndrome. Here is a goldmine!

Williams Syndrome: It's Not a Fairy Tale : NPR

Williams Syndrome: It's Not a Fairy Tale : NPR:

All Things Considered, October 14, 2006 · Fairy tales tell of wee folk who spend their lives singing and dancing. A rare genetic disorder called Williams Syndrome lends scientific support to the legends. Drummer Jeremy Vest is among those who are diagnosed with Williams Syndrome.

The premise of this article (that WS folks might be the historical reality of pixies and fairies) I find rather offensive, but the audio interview with Jeremy Vest is informational. Especially to a Dad with a drumming son!

Williams syndrome - Social Inhibition - Personality - Developmental Disorders - Brain Disorders - David Dobbs - New York Times

Williams syndrome - Social Inhibition - Personality - Developmental Disorders - Brain Disorders - David Dobbs - New York Times

The low I.Q., however, ignores two traits that define Williams more distinctly than do its deficits: an exuberant gregariousness and near-normal language skills. Williams people talk a lot, and they talk with pretty much anyone. They appear to truly lack social fear. Indeed, functional brain scans have shown that the brain’s main fear processor, the amygdala, which in most of us shows heightened activity when we see angry or worried faces, shows no reaction when a person with Williams views such faces. It’s as if they see all faces as friendly.

People with Williams tend to lack not just social fear but also social savvy. Lost on them are many meanings, machinations, ideas and intentions that most of us infer from facial expression, body language, context and stock phrasings. If you’re talking with someone with Williams syndrome and look at your watch and say: “Oh, my, look at the time! Well it’s been awfully nice talking with you . . . ,” your conversational partner may well smile brightly, agree that “this is nice” and ask if you’ve ever gone to Disney World. Because of this — and because many of us feel uneasy with people with cognitive disorders, or for that matter with anyone profoundly unlike us — people with Williams can have trouble deepening relationships. This saddens and frustrates them. They know no strangers but can claim few friends.

Wednesday, March 26, 2008

Lisa Considers the One Year Anniversary of Tatum's WS Diagnosis

Growing Up With Emma & TatPublish Postum: Spring is coming...

Easter, what can I say with Easter comes our second Williams Syndrome DX anniversary, it souled be worse…at least it was warmer then last year. You know Since Williams is what it is and such a part of our life's now I think I am done with remembering anniversary's in reference to it, I mean really why bother, it is not like I really knew Tate all that well pre Dx she was super little.

Of Books and Boys: Book Review: Musicophilia

Of Books and Boys: Book Review: Musicophilia

The final section discusses "Emotion, Identity, and Music." Different people have differing susceptibilities to music. Individuals with Aspergers may have intricate knowledge of many subjects, yet experience difficulty feeling an emotional response to music, while a whole group of individuals with Williams Syndrome can spend every waking moment engrossed in music and be unable to tie a shoe or add 3 + 5.

Country stars uplift children's hearts - Features

Country stars uplift children's hearts - Features

Sam Moore and his friends Lorrie Morgan, Travis Tritt, Wynona Judd, Jo Dee Messina and Callaway all joined together to honor the Lili Claire Foundation. The night was full of soulful duets with Sam and each guest. The musical choices included hits by Aretha Franklin, Louis Armstrong, Diana Ross and the Supremes, Conway Twitty and Amii Stewart. These hits included: "Knock on Wood," "Think,"Tennessee Waltz," "I Thank You" and "I Want To Know What Love Is."

Wynona Judd, like many others, was honored for her involvement with the Lili Claire Foundation. Judd and Moore joined together to sing a phenomenal version of Tina Turner's "I Can't Stand the Rain." Since she was one of the many people being honored for their involvement with the Lili Claire Foundation, Judd sang one of her own songs, "Love Can Build a Bridge," a song she recorded with her mother.