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

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

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

Trenton Williams makes a big impact

Trenton makes a big impact:

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

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)."