Charity fashion show benfitting Williams Syndrome students is massive success

Charity fashion show is massive success - News Guardian:

"A CHARITY fashion show proved so popular that two events were held on the same night so more people could enjoy it.

Organisers of the event at The Grand Hotel, in Tynemouth, were left amazed at the response to their show, selling out the 120 tickets within hours.

And a second show was organised – held an hour later – and helped raise a total of £3,025.50 on the night, with money still coming in.

The show was organised by Decote Dance and So&So Hairdressing, as they looked to raise money for the North East Schools Outreach Program, which helps youngsters diagnosed with Williams Syndrome and other learning difficulties."

Ellsworth Woman Camps on Roof for Williams Syndrome Boy

Ellsworth Woman Camps on Roof for Easter Seals - WABI TV5:

"Easter Seals helps kids like Scott Carignan, who came to wish Tina well with with his brother, Heath, and dad, Robert.

Scott has Williams syndrome, a genetic condition that leads to developmental issues. His dad says thanks to early intervention therapy through the Easter Seals, at two-and-a-half, he's already a success story.

'At first, he wasn't crawling, couldn't sit up or even spin in a circle on his belly. And after about six months of physical therapy he was moving and climbing stairs and jumping,' says Robert Carignan.

These days, Scott's moving quite well."

MnMs Perform at Benefit Concert - Anderson Township News at Cincinnati.com

MnMs Perform at Benefit Concert - Anderson Township News at Cincinnati.com:

"Two talented young ladies giggle excitedly as they prepare for an upcoming performance as MnMs. Megan Neal and Maria Sexton began rehearsing together in September 2009 at Music Therapy Services in Anderson Township where both have studied music for several years.

'Building a relationship through music was the primary goal for these girls who sometimes have difficulty making friends due to their disabilities,' explains music therapist Mimi Sinclair. Megan has Asperger's Syndrome and Maria has Williams Syndrome. 'Both are amazingly gifted musicians and it's so wonderful to see them have fun together,' Sinclair says. Megan studies violin, guitar, piano, and voice. She also sings in the Cincinnati Children's Choir. Maria studies keyboard and sings in her school chorus.

They will perform this Saturday, January 30, at 'An Evening of Celebration' fundraiser for Applied Behavioral Services Autism Learning Center at Molloy's on the Green. Also performing are Team Lachey and Chaselounge."

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."

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."

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.”"

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."

Running for Sophie

Ultra | Running for Sophie:

"Sophie’s Run, an awareness raiser for Williams Syndrome and a fundraiser for the future needs fund for Sophie Gerding, a 6-year-old girl from Philomath will take place at 9 a.m. Saturday, April 25, at Willamette Park. For registration and information see, http://sophiesrun.com/."

Long Island Fundraiser Expected to Exceed all Expectations

Long Island News - Long Island Fundraiser Expected to Exceed all Expectations | Long Island Press Releases:

"Over 600 guests expected at Long Island Gala to support families affected by Williams Syndrome; Volunteers beat the odds and celebrate an outpouring of support for the Williams Syndrome Association

(Great Neck, N.Y.) What was expected to be a small-scale event - dinner and dancing for 200 people, has turned into a sold out gala for more than 640 people! The attendees, many of whom had never heard of Williams syndrome, will gather to support the programs of the Williams Syndrome Association (WSA) at Leonard’s of Great Neck on February 21st. Guests will be invited to participate in several auctions and fundraising opportunities prior to dinner and live entertainment provided in part by adults with Williams syndrome. The evening’s theme is “Celebrate the Children in our Hearts.”"

Local woman has something to smile about

telegraphjournal.com - Local woman has something to smile about - Breaking News, New Brunswick, Canada

Michelle Arsenault, is a Saint John woman with Williams Syndrome.

Her debilitating condition caused her to have severe dental issues throughout her life, with teeth so misaligned they were almost in three rows. The condition of her teeth made it difficult to chew and swallow food.

Arsenault, who lives with her single mother Darlene Gallant and sister Jocelyn, works at Key Industries. Her family was unable to afford the dental work she required to fix her teeth.

That is, until the dental committee of the Saint John Kiwanis Club stepped in to pay for the procedures.

After four years, Arsenault has a Colgate smile.

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."

Locals compete in 5K race to benefit Williams Syndrome

Locals compete in 5K race to benefit Williams Syndrome | coshoctontribune.com | 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."

£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.