Lions Club comes to the aid of local family with 13 year old Williams Syndrome Girl

Main Street Los Gatos: San Jose Mercury News:

"The Los Gatos Lions Club is raising money to help the family of a local woman who died this week from cancer.

Michelle Hargett Beebee, a graduate of Los Gatos High, was a single working mom, studying to be a teacher, when she was diagnosed in September with stage 4 pancreatic cancer. It was too late for any possible surgical success, and she died Monday at age 43 while in hospice care.

Beebee's parents, Carol and Joe Hargett, will become the primary caregivers for her children, sons Austin, 16, and Alex, 10, and a daughter, Aubrey, 13, who has Williams syndrome, a chromosomal disorder."

Williams Syndrome Music Savant Gloria Lenhoff performs Jewish song "Maoz Tzur- Rock of Ages"

Pioneering Shed Shop fundraiser dies at 79 : Express & Star

Express & Star:

"Pioneering Shed Shop fundraiser dies at 79.

A grandmother who ran a charity shop from the bottom of her garden, raising more than £65,000 over two decades, has died. Pauline Barnett was 79.

Mrs Barnett set up her shop in 1979 in a shed at her home in Needwood Grove, Stone Cross, West Bromwich. It was such a novelty at the time, it attracted bargain hunters from as far afield as Ireland.

The mother of three started selling secondhand clothes to raise money for the Williams Syndrome Foundation. Her son Michael was born with the condition, which causes mental and physical disabilities, and died aged 35."

Canadian Member of Parliament calls for Williams Syndrome awareness week | NDP

Siksay calls for Williams Syndrome awareness week | NDP:

"Mon 05 Oct 2009

OTTAWA – Today, Bill Siksay (Burnaby Douglas) introduced a private member’s bill which would designate the week of August 1 to 7 every year as “Williams Syndrome Awareness Week.”

Williams Syndrome is a rare genetic disorder that is caused by an abnormality in chromosomes. It can affect brain development and can cause various physical problems such as cardiovascular disease. Individuals with this disorder become highly verbal and social.

“Designating this week would raise awareness of Williams Syndrome, and hopefully advance education and research into the condition,” said Siksay. “I think a heightened awareness of this condition will facilitate the integration of those with Williams Syndrome into society.”

'By establishing this Awareness Week for Williams Syndrome we are creating world knowledge for many parents, professionals and the public of a syndrome that often goes undiagnosed or misdiagnosed,” said Diane Reid, Chair of the Canadian Association for Williams Syndrome. “Our kids throw educational theories out the window since their tested IQ levels are a series of peaks and valleys that aren’t supposed to exist.”

“This bill will go a long way towards ensuring individuals with Williams Syndrome will be included in their communities so they may make their unique contributions to Canadian society,” concluded Siksay."

MonroeNews.com - The Monroe Evening News, Monroe, MI

MonroeNews.com - The Monroe Evening News, Monroe, MI:

"Now a 17-year-old 10th-grader who enjoys music, hanging out with friends and has ambitions to attend the University of Notre Dame, Kurtis is an international speaker who uses his life story to send a message that people like him can succeed if given the opportunity.

'My disability is a part that makes me be me,' he said. 'We don’t need prejudice here in Michigan.'

Kurtis has Williams Syndrome, a rare genetic disorder that causes delayed speech, development delays and learning disorders. It is incurable and those who have it are largely misunderstood as not having the ability to retain information or learn, Mrs. Cunningham said.

During a guest appearance at the Monroe County Intermediate School District, Kurtis and his mother, who live in Holland on the west side of the state, used a computer during their presentation to help educators realize that those with disabilities sometimes need electronic assistance to excel and to be heard."

Raising awareness, funds - Greenwich Times

Raising awareness, funds - Greenwich Time:

"Still, the Conrods know people with Williams syndrome typically require multiple therapies, such as speech and physical, since they often have delayed verbal skills and joint stiffness as they grow. They also can require surgery, sometimes multiple procedures. The Conrods said George will need open heart surgery to fix the narrowing of his aortic valve.
Dr. Barbara Pober, who has been treating George since he was a newborn, is a geneticist based at Massachusetts General Hospital. For the past 20 years, she has been treating hundreds of people with the syndrome, which is caused by random genetic mutation. She also has conducted research, looking into genetic influence on social and cognitive skills.
In effect, anyone is at risk for the disorder, no matter what gender, ethnicity or hereditary influences. The odds go up, to 50/50, for someone whose parent has the disorder.
Prior to the early 1990s, when a blood test became available to test for elastin, a diagnosis was determined by looking for physical and developmental characteristics, Pober said.
She said some of the latest research is focused on studying the missing genes to determine function, as well as therapies or other treatments that could compensate for the omission.
'Every parent dreams the developmental delays can be lessened, but that is a tough nut to crack,' she said. 'But that doesn't mean you can't ask the question or design research. Are there therapies ... that can ameliorate or minimize some of the complications.'
Those kinds of questions are what drew Westport resident Marshall Kiev to the board of the Williams Syndrome Association. As the father of a young daughter with the disorder, who has had multiple heart operations, he is working to raise funds for research work.
'I remember asking, 'Can anything be done?' ' he said of a conversation he had with several friends who were doctors.
The answer? More money was needed for research.
His first project focused on cardiovascular issues, particularly the narrowing of arteries, which affects about 75 percent of those with the disorder, some more severely than others.
'We know what causes it, but we don't know how to fix it,' he said.
That effort led to a symposium last year at Yale University and the $320,000 grant.
'We've seen the mountains, now we have to figure out how to start climbing them,' he said."

Mum's plea over theft of disabled son's bike

Evening News 24 - Mum's plea over theft of disabled son's bike:

"The youngster, who suffers from Williams Syndrome, which physically and mentally means he is about the age of a 14-year-old, has been left upset by the theft which happened outside a shop in Distillery Square."

LifeWay conference highlights special needs ministry

LifeWay conference highlights special needs ministry:

"The unreserved enthusiasm continued as class members answered Bible lesson questions during Special Friends Vacation Bible School, part of the special needs ministry track offered at LifeWay Ridgecrest Conference Center during LifeWay’s The Power of the Connected Sunday School Conference (aka Sunday School Week) July 10-13.

'Have any of you ever shared Jesus with anyone?' asked teacher Jo Ann Banks.

'Yes!' replied adult learners who had disabilities ranging from intellectual disabilities to autism to genetic disorders.

'He died on the cross for our sins – so we could have eternal life,' said Rob Powell in his strong, outgoing, matter-of-fact voice. Powell, 39, has Williams syndrome."

LeAnn Rimes Visits Vanderbilt's Williams Syndrome 2009 Music Camp

LeAnn Rimes Williams Syndrome 2009 - a set on Flickr

You can view photos of the event by clicking the link above.

Parents of special-needs child focus on achievements | SouthCoastToday.com

Parents of special-needs child focus on achievements | SouthCoastToday.com:

"Providing early intervention for children with special needs is vitally important to their development. That intervention might include family-centered involvement with physical, occupational and speech therapy and the advice of a medical specialist, genetic counselor or educational psychologist. Many services are mandated by federal law and can help families lessen the impact of a child's disability.

'Research has shown that providing intensive services at the earliest age possible can offset the effects of disabilities,' says Christine Riley, an education advocate for Cape Cod and the Islands. 'The earlier the child is exposed to services, the less the chance that the disability will impact their education and their generalized functioning.'"

'He can be a real baby now'

'He can be a real baby now' | KOMO News - Seattle, Washington | Local & Regional:

"Cody was just six months old when doctors diagnosed him with Williams syndrome, a genetic disorder that causes heart and vessel problems.

Local doctors had done all they could for the baby, but his parents found a doctor in Cleveland who thought he could do more. So they took off across the country, banking on a chance.

'There's not always a good outcome but there's a chance and that's what we're hoping on is that chance,' said Mitchell.

And that chance paid off. Cody underwent surgery on April 27 and spent a couple of weeks in the hospital.

'He pulled through really well and they were able to open up quite a few of the arteries,' Mitchell said."

Cookie Mondays..... Ice Cream Sundays

Happy Birthday Harrison!:

"Well, for Harrison, it was approaching the microphone at his high school graduation two weeks ago, and delighting the crowd with a few of those famous knock-knock jokes. In that crowd, of course, a very proud and tearful family."

High School Student Wins Science Fair with Williams Syndrome Project

Montgomery News:

"This year’s project, “The Effect of Williams Syndrome on the Symmetry of the Planum Temporal in Musicians” won a second-place award in its category in this year’s Delaware Valley Science Fair, followed up with a first place in the May 17-19 Pennsylvania Junior Academy of Science competition at Penn State University.

The brain’s planum temporale controls language, auditory functions and pitch differentiation. Williams syndrome, which Keppley has been studying for the past few years, is a rare genetic condition that causes medical and developmental problems. People with the syndrome are also more likely to have musical skills."

Rare insights from pupils' film in New Zealand

Rare insights from pupils' film | Stuff.co.nz:

"Michael reveals what it means to be a young man with the rare, genetic condition of Williams syndrome which causes medical and developmental problems. Because Michael lives in their small community, the Year 7 and and Year 8 film-makers knew him but not really as a person until they spent time together, Ms Anderson said. They photographed him at a garage where he likes to fix cars and bicycles, and video-taped him playing his electric guitar.

Wairau Valley School principal David Nott said the project was relevant to the whole community. Students were able to 'closely consider how life is for someone with the challenges of a disability. Our special guests were fantastic and our students are richer because of the experience.'"

Trike is spot on for Stockton teenager

Gazette Live - News - Local News - Trike is spot on for Stockton teenager: "GETTING around is now a whole lot easier for 15-year-old James Pickering.

The Billingham teenager has a rare developmental disorder called Williams Syndrome and can walk only very short distances.

But thanks to a group of bingo-goers and national charity Whizz-Kidz, James is now riding high on a specially-adapted tricycle.

“I’m really pleased with it,” said James. “I’d like to say thank you.”"

Running for Brittany

Running for Brittany | coshoctontribune.com | Coshocton Tribune:

"COSHOCTON — Sprinting past the finish line, the number 25 proved to be a lucky one for Steven Wachtel.

That’s the number the 2007 River View High School graduate wore on his white T-shirt as he competed in the fourth annual Brittany’s 5K Run/Walk Benefit. His winning time was 18 minutes and 13 seconds.

“It feels good,” Wachtel said while still trying to catch his breath. “Whenever I get a chance to run I take it. It feels good to compete, but more than that running locally is about coming back to see friends and support a good cause.”

The yearly spring event was held Saturday at Lake Park to benefit the Williams Syndrome Association.

Williams Syndrome is a rare congenital disorder on chromosome seven that causes medical and developmental problems.

The event is named after 18-year-old Brittany Rogers who has the disorder. She is the daughter of Coshocton County Sheriff Tim Rogers and Nanci Rogers. Nanci serves as the president of the Williams Syndrome Board of Trustees.

“It’s a small association that is underfunded,” Nanci said. “Some of our philanthropic efforts include fundraisers to increase awareness, fund camps, conventions, research and education.”"

Baby Cody recovering after open heart surgery

Baby Cody recovering after open heart surgery | KOMO News - Seattle, Washington | Local & Regional:

"Cody suffers from Williams Syndrome, a genetic disorder involving heart and vessel problems that sent Cody into cardiac arrest in the past.

'When I watched him go into cardiac arrest and when they told me my son was going to die, (it) was a lot worse than I ever thought could happen when they said what was wrong,' Mitchell said.

Doctors have since told Mitchell that they're lucky Cody has even made it this far.

'I kind of felt lost when they said there was nothing they could do for him,' she said.

Fortunately, Michell and her family found the Cleveland Clinic and a doctor who said there was something he could do for her son.

'And although I thought it was going to be a challenging case, I said, 'Sure, we can do this,'' said Dr. Constantine Mavroudis.

Believe it or not, doctors used a Gortex patch - made of the same material as waterproof clothing - to make Cody's pulmonary arteries larger."

Rare condition gives woman low IQ, perfect pitch

State-Journal.com - Rare condition gives woman low IQ, perfect pitch:

"Gloria Lenhoff can’t read music, but the 54-year-old Stewart Home School resident has spent her life learning more than 2,000 songs by ear.

Lenhoff has Williams Syndrome, a rare genetic condition that gave her both an IQ of 55 and astonishing musical talent."

Video is hosted on the site.

Michelle Announces a Golf Tournament to Benefit Williams Syndrome Association

The 4 of Us: golf tournament to benefit WS:

"Windham Country Club is pleased to announce it is hosting The Bill Gallagher Memorial Golf Classic to benefit Williams Syndrome Association on August 14th, 2009."

Williams Syndrome Drummer!

Williams Syndrome Drummer from Kimberly Shively on Vimeo.