Tuesday, December 6, 2011

Ex-worker gets prison for stealing from client - Toledo Blade

Ex-worker gets prison for stealing from client - Toledo Blade:

"John Abood was the perfect victim, his sister said.

Born with Williams syndrome, Mr. Abood has a very low IQ, trouble with the most basic math, and is very friendly and trusting — all symptoms of the rare genetic disorder.

So, when his siblings realized the 59-year-old man had no money in his checking account and extensive overdraft fees, they knew someone likely had taken advantage of Mr. Abood’s trust.

A former Anne Grady Center employee once assigned to help Mr. Abood buy his groceries and pay his bills was sentenced Monday in Lucas County Common Pleas Court. Gary Smotherman, 39, of 146 Rosalind Pl. was sentenced to 17 months in prison and ordered to pay $6,500 in restitution."

'via Blog this'

Friday, November 25, 2011

DBHS Gives Student a Special Gift - Diamond Bar, CA Patch

Calvin, 17, has Williams Syndrome, a rare neurodevelopmental disorder. Set to graduate from DBHS next year, Calvin spent his high school years as water boy for the football team, and was also involved with track and field. During the school’s recent Homecoming game, Calvin received a big surprise: the athletic department gave him his own letterman jacket.

“Coach Ryan Maine and trainer Stacy Camou got together and gave him a letterman jacket right before the game, when the football players were announced with their parents and standing on the sideline,” Cloris said. “They called us up and placed us in the middle of the field and said some wonderful things about Calvin. It was so touching and wonderful, and he was so excited and happy.”

Although Calvin couldn’t play or compete, being part of the team in some capacity was an enriching experience.

DBHS Gives Student a Special Gift - Diamond Bar, CA Patch:

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Wednesday, November 9, 2011

Call for Presentations | Williams Syndrome Association

Call for Presentations | Williams Syndrome Association:

The Williams Syndrome Association will celebrate 30 years of support and education for individuals with WS and their families at next summer’s National Convention – July 3-7 in Boston, Massachusetts. Throughout the week we will bring together more than 60 experts for education and networking opportunities. The WSA’s national convention and international professional conferences are the premier continuing education event for Williams syndrome, offering unparalleled program quality and diversity. We hope you will join us!

Tuesday, November 8, 2011

Hometown Hero: Sweet Volunteer is 'Asset to Beaumont' - Royal Oak, MI Patch

Hometown Hero: Sweet Volunteer is 'Asset to Beaumont' - Royal Oak, MI Patch:

Joshua Levinson is a popular person atBeaumont Hospital in Royal Oak for a couple of reasons — his infectious smile and his candy cart.

The 31-year-old Royal Oak resident is known in some circles at the hospital as the Candy Man — the guy, who as the Sammy Davis Jr. song suggests, “makes the world taste good.”

For the past half-dozen years or so, he has volunteered five mornings a week at Beaumont selling chocolate and sugary treats to the staff and visitors, and otherwise brightening mornings with his winning smile.

"I like my job. It's fun," he said as he made change for a woman in the south entrance lobby. He easily charms the customer with his friendly face and warm personality. He may not say a lot to her, but she leaves smiling.

“I would say more people know Joshua than me,” said his father, Dr. Marty Levinson, a Beaumont pediatrician, “and I have been on staff here for 31 years.”

Tuesday, October 25, 2011

Super-social gene may hold clues to autism, other disorders

In some cases, he's taken cells from children with Williams syndrome, but instead of using the somewhat painful procedure to obtain skin cells, he's taken cells from lost baby teeth, using a so-called Tooth Fairy extraction kit.Gage said he’s intrigued at the idea of dissecting something as complex as human behavior down to the level of cells in a petri dish.
Already, since the grant was awarded in May, Gage and his colleagues have shown that the early proliferation of brain cells is lower in people with Williams syndrome than in those with normal function.
With time and persistence, it might one day be possible to develop drugs or other therapies that could be used to treat the conditions, Gage said.
Williams syndrome is the perfect test case for studying the link between genes and behavior, Bellugi said. The disorder is very specific, occurring only when a certain cluster of genes is missing from one of two copies of chromosome 7.
“We’re only talking about something like 25 to 28 genes out of 30,000 genes in the brain,” Bellugi said. “And it’s always the same set of genes.”

Monday, September 19, 2011

Learning to see: How vision sharpens – The Chart - CNN.com Blogs

Learning to see: How vision sharpens :

"The champion of the infant visual system is motion, which develops early and is relatively difficult to disrupt. At four weeks of age, babies can detect a flickering stimulus in a single location almost as well as adults. Babies can discriminate motion direction around seven weeks and speed by twenty weeks. Perception of global motion patterns, like raindrops seen through the windshield of a moving car, improves rapidly between three and five months and then continues to develop slowly through middle childhood. This aspect of motion processing, the most vulnerable to disruption, is impaired in some developmental disorders, including dyslexia, autism, fragile-X syndrome, and Williams syndrome."

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Sunday, September 18, 2011

Six Johns Hopkins Faculty Named Guggenheim Fellows | R&D Mag

Six Johns Hopkins Faculty Named Guggenheim Fellows | R&D Mag:

"Barbara Landau is the Dick and Lydia Todd Professor and chair of the Department of Cognitive Science. Her work focuses on language learning, spatial representation and the relationships between these foundational systems of human knowledge. "The fellowship will allow me to work full-time during my sabbatical this coming year on a book that illuminates the nature of spatial knowledge in people with an unusual genetic deficit that results in severely impaired understanding of space," Landau said. The book, she said, will be titled 'Gene, Brain, Mind and Development: The Puzzle of Williams Syndrome' and is under contract with Oxford University Press. "I'll be spending most of the year here at Johns Hopkins but will also be traveling a bit to work with colleagues who specialize in the nature of human spatial knowledge," she said."

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Thursday, July 14, 2011

LT alum takes home gold at Special Olympics games in Greece

For a kid who started to swim before she could walk, competing for Team USA is sweet indeed for Jeanne DeCarlo at the Special Olympics World Summer games in Athens.

And winning a gold medal in her third and final race July 3 was like the proverbial icing on the cake for the Lyons Township High School alumna from Brookfield with the encouragement of her own cheering section of 10 family members and friends.

“It was tremendous,” DeCarlo said after a whirlwind 10 days of competing in the same venue as the 2004 Olympics. “I did very well, and everyone was very helpful.”

DeCarlo, 37, won a gold medal in the 4x50 meter freestyle relay. a bronze in the 100 meter freestyle and a fourth-place in the 50 meter freestyle race.

“It was amazing meeting people from all over the world,” she said. “We traded pins, and I have 40 pins from different countries, like Canada, Mexico, New Zealand, Germany and India.”

A highlight of the trip was hearing Stevie Wonder perform at the opening ceremony.

“It was amazing to see him. He got the crowd dancing,” DeCarlo recalled. “I did a dance with a Greek dancer, and we went around in circles.”

Thursday, June 16, 2011

Illinois Swimmer with Williams Syndrome Competing in World Special Olympics

June 16, 2011 (ELMHURST, Ill.) (WLS) -- On Friday, a local gold medal swimmer is heading to Greece to represent the U.S. in the Special Olympics World Summer Games.

She is the only swimmer from Illinois.

After 23 years of winning medals in different events, 37-year-old Jeanne Decarlo's dream has come true.

At Elmhurst's YMCA, Jeanne practices swimming as her coach and mom Sheri encourages her to swim faster.

Swimming has always been something Jeanne does well. She was born with Williams Syndrome.

Thursday, June 9, 2011

Study Suggesting Connections Between Autism and Williams Syndrome Can be Downloaded free here

Neuron - Multiple Recurrent De Novo CNVs, Including Duplications of the 7q11.23 Williams Syndrome Region, Are Strongly Associated with Autism:

Williams Syndrome Teen Speaks Out Against Bullying

Click the title to watch the video.

Scientists find new genetic clues that may link Autism to Williams Syndrome

Scientists find new genetic clues to autism - The Checkup - The Washington Post:

"The third analysis, led by by Matthew State of Yale and colleagues, group found an association between mutations and autism that, when deleted, also play a role in Williams syndrome, a rare developmental disorder. People with that condition tend to be highly social, sensitive and empathetic. In contrast, people with autism have difficulty interpreting social cues and interacting with others.

“This relatively small genomic interval clearly holds important clues to understanding the social brain,” State said in a statement.

But given the large number of genetic variations that the analyses have identified, the findings indicate that the condition is extremely complicated, the researcher said.

“The diversity implies that a treatment for one form of autism may have no value for the majority,” Wigler said."

ABC News runs a couple of pieces on Williams Syndrome

Friday, May 20, 2011

Salk researcher gets $5.5 million grant to study Williams syndrome

The Salk Institute for Biological Studies was awarded a $5.5 million research grant today to study Williams syndrome as a way to learn more about neurological development in children.

The award from the National Institute of Child Health and Human Development could help researchers untangle the connection between genes and social behavior.

“How the brain processes social information and integrates it with other forms of perception and learning is one of the major frontiers in neuroscience,” said Ursula Bellugi, director of the Laboratory for Cognitive Neuroscience at the institute.

“Using Williams syndrome as the basis for a new approach to social neuroscience is exciting and promising, in part because its genetic basis is clearly understood, and it is associated with a very specific pattern of cognitive strengths and weaknesses and some puzzling paradoxes,” the professor said.

The condition is the result of a faulty recombination of cells during the development of sperm or egg cells, leaving nearly all sufferers lacking certain genes.

Victims are gregarious and attracted to strangers, but have difficulty understanding inanimate objects. They are beset with health problems and have a low IQ.

Bellugi said victims of the syndrome who are asked to draw a bicycle will instead draw its parts randomly across a piece of paper.

“Understanding the mechanisms and pathways underlying the organization of human social behavior is important in a wide variety of mental disorders,” Bellugi said. “By dissecting Williams syndrome, we hope to gain new insight into other neurodevelopmental disorders such as autism.”

Wednesday, May 11, 2011

Battling Williams syndrome - FOX23 News

Battling Williams syndrome - FOX23 News :

"Vanderbilt University is studying how music - and more - affects anxiety at this special camp for people with Williams syndrome.

'It's kind of a lesson in contradictions. How can people who have significant developmental disabilities also have pronounced and marked interest in music and musical talent,' Dr. Elisabeth Dykens asked?

The answer could lead to new treatments for all people with anxiety. Research Seth is proud to be a part of."

There is a very good and short video on the link or you can go directly to it here: http://clipsyndicate.com/video/playlist/18795/2450897?wpid=9616

President Nominates Former NAB Exec To Intellectual Disabilities Committee

President Nominates Former NAB Exec To Intellectual Disabilities Committee - 2011-05-10 21:38:04 | Broadcasting & Cable:

"President Obama has nominated former National Association of Broadcasters government affairs executive Carol Wheeler to be a member of the President's Committee for People with Intellectual Disabilities.

Wheeler, who most recently was coordinator for the Washington Chapter of Project Children, was formerly VP for government affairs with NAB as well as a consultant to America's Public Television Stations, which advocates for noncom stations in Washington.

Wheeler is the mother of a child with Williams Syndrome, a genetic disorder that can lead to cardiovascular problems and developmental and learning difficulties in children who are often also highly verbal, social and musically gifted.

'These fine public servants both bring both a depth of experience and tremendous dedication to their new roles,' said the president in announcing a series of appointments to the committee. 'Our nation will be well-served by these men and women, and I look forward to working with them in the months and years to come.'

'The mission of committee is 'to provide advice and assistance to the President of the United States and the Secretary of Health and Human Services on a broad range of topics that impact people with intellectual disabilities and the field of Intellectual Disabilities.''

iPads help kids with disabilities to learn

MILFORD, Pa. — Gabe wasn't speaking until he started using an iPad, says Ann Gillerlane, director of the Center for Developmental Disabilities.

Three-year-old Gabe (the center asked not to use his last name) has been diagnosed with Williams syndrome, a rare neurodevelopmental disorder caused by an abnormality in chromosomes, according to the Williams Syndrome Foundation. This slows Gabe's development.

Before the iPad, Gabe wasn't talking. He couldn't communicate. He and his parents, were frustrated. But when one of the staff at the center started working with Gabe on her iPad, his interest was sparked.

Then one day at the center, Gabe said "Hee Haw," and pointed to a picture of a donkey on the iPad. Since then his language skills have been improving.

Gillerlane was amazed. "I'm not the type of person to go out and buy the latest technology," Gillerlane said. "But when I saw how Gabe was responding, I knew we had to have iPads."

Apple introduced the iPad in March 2010; an unforeseen benefit has been the way people with disabilities have used the table computer to overcome communication difficulties and learn new skills.

Monday, May 9, 2011

Davison event raises awareness of rare genetic disorder

Davison event raises awareness of rare genetic disorder :

DAVISON, Michigan — When kids and adults walked the track at Collins Stadium on Saturday they will be trying to raise awareness about a rare genetic disorder that affects at least two local families.

New Jersey is running for awareness

Heather O'Connell's daughter, Delaney, was a year old when she was diagnosed with Williams syndrome, a genetic condition often characterized by cardiovascular disease, learning disabilities and developmental delays.

"She first walked when she was 21 or 22 months old," O'Connell said of Delaney. Earlier this month, as a member of the YMCA's Special Kids Organized Recreation team, the girl who didn't walk until she was nearly 2 years old won the gold and two silver medals at the trials for the Special Olympics Summer Games.

Delaney, now 8, will also join her mother for the NJ Walks for Williams and 5K Run at 9:15 a.m. Saturday at Veterans Park, Kuser Road entrance, Hamilton. A one-mile awareness walk and fun run will begin at 10 a.m., with a USATF-NJ Grand Prix Event at 10:30 a.m.

O'Connell, a 39-year-old Pennington resident who serves as the regional chairwoman of the Williams Syndrome Association, organized the walk last year and raised $5,000 with the help of about 200 participants, including kids.

This year, her message is that awareness and funding for Williams syndrome help support not only those living with the condition, but also their families and educators in the community.

"Awareness in the community is so important because there are so few people living with Williams," she said. Nationally, 30,000 people have it.

"Others should understand why our kids are so social and so loving that they may go up to a stranger and give a stranger a hug," O'Connell said.

Delaney learns social skills from her parents and her teachers, but she can't control her impulse to approach strangers for friendly conversation.

"I am trying to let her know that not every stranger wants to have a conversation with a cute little girl," she said.

Williams kids are inquisitive and sweet, yet sometimes they feel a level of anxiety about situations that "puts their brain in overdrive," she said. "They are just so intrigued and interested with other people, who they are and what they are about. It's not a bad quality, she just needs to know how to use it properly," O'Connell said.

Friday, May 6, 2011

Berkshire Hills Music Academy in South Hadley uses music to teach everyday skills to learning-disabled students

SOUTH HADLEY – Behind a cluster of tall trees on Route 116 is a sunlit mansion that houses a lively and intriguing educational facility.

“Berkshire Hills is filled with music and positive attitude from one end of the day to the other,” said Gary Shaw, the new director of Berkshire Hills Music Academy in South Hadley.

The unusual post-secondary school celebrates its 10th anniversary this year.

It serves students with learning disabilities caused by Asperger’s, Down and Williams syndromes, brain injury, cerebral palsy and other conditions

They don’t have to be musically gifted to enroll, but music is used to help them master the everyday demands of living.

“The skills they use for music transfer over to independent-living skills,” said Kristen B. Tillona, director of admissions at the school.

Students get two private music lessons a week. They are also taught fiocus, confidence, socieal engagement -- and such practical things as how to do laundry.

Tuesday, May 3, 2011

Photo Gallery of Williams Syndrome Folks Meeting


Tuesday, April 26, 2011

It was awful not knowing what the problem was - The Irish Times - Tue, Apr 26, 2011

It was awful not knowing what the problem was :

"THE LOWEST POINT of my life was the day I had to watch my baby daughter rolling around on the floor of the livingroom in pain and knowing that there was no point in picking up the phone because nobody would listen.

We had already been to the most eminent doctors in the country and they told us she wasn’t in pain, yet she so obviously was. We had no idea what we were dealing with and that was the worst part of the early years of her life.

Karen was born on August 19th, 1983, at Portiuncula Hospital, Ballinasloe, after a normal pregnancy. My late husband Paschal and I were thrilled that the baby was a girl, as we already had a boy of two-and-a-half called Mark.

As an infant, Karen had difficulty in feeding and keeping her bottle down. She began to suffer what we thought was colic, crying for three to five hours at a time during the night. This persisted until she was about nine months old. She refused solid food and, despite many visits to the local hospital for observation and investigation, no one could pinpoint what her problem was.

It was also apparent at this stage that Karen’s development was very slow. She was making no effort to walk and was not terribly interested in what was going on around her. Then, she developed a rectal prolapse. After the awful shock the first time it happened, I had to learn to cope with it. This was when the doctors told me it was not causing Karen any pain and that it would correct itself when she got older.

She was referred to Our Lady’s Hospital in Crumlin for investigation in November 1984. While there, she had surgery on two hernias. At this stage Karen was a year-and-a-half old. She had had such a hard time since she was born that we felt that we hardly had time to get to know her as an individual.

However, I did know one thing about her – she had a very loving smile and during the short periods when she was well, that loving personality shone through. There were many times when her little smile had saved her from my wrath at five o’clock in the morning!

Inaugural 5k helping families facing rare syndrome find support || OnlineAthens.com

Blueprint: Inaugural 5k helping families facing rare syndrome find support || OnlineAthens.com:

'We wanted to see if there are other families out there - and they just started to pop out of the woodwork,' Marisa Elrod said.

The Elrods have organized Northeast Georgia's first Race for Williams Syndrome 5K Trail Run and 1-mile Family Fun Walk to help more Georgia families affected by the syndrome find one another and share stories. They also want the general public to be able to find out more about the syndrome and the children it affects.

So far, close to 400 people have signed up for the 5K and family fun walk, which will be held at 2 p.m. Sunday at Crow's Lake on U.S. Highway 129 in Jefferson. Participants can register the day of the race, and the public is invited to attend.

'Really, this is for our own community, so people will know about Avery's condition - I have not met a single person in the general public who had heard of Williams,' Elrod said.

Family Raising Williams Syndrome Awareness

Sun Telegraph - Family Raising Williams Syndrome Awareness:

"PEETZ, Colo. – In many ways, Samantha Davenport is not unlike any other northeastern Colorado resident. She loves spending time with her friends, discussing her day with her family and volunteering at her local church in Peetz.

What sets the 23-year-old apart from all but an estimated 20,000 to 30,000 Americans is a rare genetic condition affecting 1 in 10,000 people worldwide.

Law cyclists raise over £22,000 for Williams Syndrome Foundation - Local Headlines - Lanark Gazette

Law cyclists raise over £22,000 for Williams Syndrome Foundation - Local Headlines - Lanark Gazette:

A sponsored cycle round the Isle of Cumbrae, involving over 60 women from Law last month, raised a staggering £22,000.

Event looks to help put disorder on the map

In 2009, the event raised about $6,000, and served as a template for future walks across the U.S. In 2010, the walk raised almost $12,000. This year's goal is $16,000.

"You want people to understand what it is," Ridgley said. "Maybe they know someone who has an undiagnosed child. I think kids are a lot more understanding and open to these kids that have disabilities when they learn about them."

It was immediately after Tatum was born that doctors noticed her heart was not pumping blood properly, and she had open heart surgery when she was 4 days old. She was diagnosed with supravalvular aortic stenosis, a common affliction of people with Williams syndrome. Tatum is now monitored regularly and visits experts at the University of Louisville with her family each year. She will eventually need her descending aorta replaced.

Another common condition of the disease is poor vision and strabismus, or crossed eyes. Tatum had surgery to correct her strabismus last year. She also suffers developmental delays, scoliosis, and mental and speech difficulties. Her parents hope that with the help of an aide she can attend regular public school, starting next year.

Disabilities differ in each person with Williams. Ridgley's friend and fellow event organizer, Erin Rupolo, said her daughter Sophie has exhibited different characteristics than Tatum.

"We don't know what her future will be like. We'll just have to be patient and see what happens," Rupolo said.

Sophie was diagnosed at 3 months.

"She had extreme colic, never smiled and was miserable," Rupolo said. "I kept going to the doctor, who said she just had colic and not to worry, but I knew something was wrong."

Finally, a developmental pediatrician ordered a series of tests, including a metabolic microarray, which identified genes missing from the seventh chromosome.

At almost 28 months, Sophie is in excellent health, and has only mild stenosis, according to Rupolo, but has the common facial features, such as puffy eyes, a broad nose and a pronounced mouth.

Last year, Sophie had surgery to correct her crossed eyes but still wears glasses. She also has low muscle tone and some developmental delays, but like Ridgley, Rupolo hopes to keep her daughter in public schools with aides to assist her.

Adults with Williams syndrome often live with their parents, and the adolescent years can be difficult. But Ridgley and Rupolo take their challenges in stride and support each other.

"Of all the things my daughter has, it could be a lot worse," Ridgley said.

Rupolo agreed. "They are wonderful individuals, and we will enjoy them and help them to be happy and self-reliant in any way we can."

Tuesday, April 19, 2011

Music Therapists Needed for WS Camp

The Williams Syndrome Association is searching for 1-2 MT-BC’s, and 3-6 music therapy students (any level) to work our 11th annual Music Therapy Camp for children ages 6-12 with Williams syndrome (WS). Our music therapy based camp at Indian Trails is designed to provide a variety of musical experiences for younger children with Williams Syndrome in a relaxed, natural setting. Children ages 6-12 participate in music therapy sessions that address non-musical goals, while enhancing existing musical abilities and interest. Parents will learn about the possible benefits of music therapy to their child’s development.

Thursday, April 14, 2011

ParenThots - My special Williams Syndrome child

ParenThots - My special Williams Syndrome child:

"Malaysia now has its first “Child Development Centre” in Hospital Universiti Kebangsaan Malaysia (HUKM), Cheras, and it is equipped with specialists for special children. You may be flooded with lots of doctor's appointments initially but you will go with the flow once you see progressive milestones in your child's development.

We have limited support for Williams Syndrome in our country, and I think networking with other parents will also be a great source of support and encouragement to bring up a Williams Syndrome child."

Tuesday, April 5, 2011

Did God Create Williams Syndrome?

My friend Stacia pens a thoughtful article here.

Williams syndrome (along with all the various other genetic disorders) isn’t God’s fault. Genetic mutations (including spontaneous deletions on part of the seventh chromosome) are a now-natural result of no longer living in a “very good” world. So, did God create Williams syndrome in this sense? No—we, sinners in the hands of a holy God, are the responsible parties.

However, there’s something else that needs to be addressed, as well.

The Bible clearly teaches that God is the author of life—He forms each one of us and knits us together in utero (Psalm 139:13–16). The Bible also clearly teaches He is sovereign over His creation—He is the one who is in control—not a laissez-faire deity that wound up his creation and now lets it go as it pleases. (See, for example, Deuteronomy 3:24; 1 Chronicles 29:11–12; Jeremiah 1:5; Daniel 4:34–35; Nehemiah 9:6.)

Just as God is in control of the intricate workings of the universe, He is also in control of the intricate workings of conception. As such, I can’t escape the thought that we are who we are—genetic mutations and all—as the result of God’s handiwork. In this more individualized sense, God gave our son (and each one of us) a specific genetic combination, which in our son’s case, included a deletion of part of one of his chromosomes.