Williams Syndrome Grows in Awareness, Research

“Williams Syndrome is a rare genetic condition — so rare, in fact, that few people have ever heard of it.”

So began an ABCNews.com article from June 9, 2011, a day before “20/20″ ran a comprehensive story on Williams Syndrome. Now, partly because of these stories, awareness of the condition has increased dramatically, creating various benefits for those with Williams Syndrome as well as their families and doctors.

“Awareness has skyrocketed, for a relatively rare syndrome,” said Terry Monkaba, executive director of the Williams Syndrome Association (WSA). Affecting one in 7,500 newborns, Williams Syndrome (WS) causes a combination of ebullience, empathy, fearlessness, linguistic and musical talent, elfin features, heart conditions and bad teeth.

After the “20/20″ story last June, Williams Syndrome was in the top 10 Google trends for three straight days, Monkaba said. The website averaged more than 1,000 hits per day for a month after the broadcast, she added. On an average day before that, it would get 200.

In addition, WSA fundraising is up 35 percent over last year, Monkaba said. The scholarship budget for WSA summer camps has jumped to $135,000 from $35,000 two years ago. The number of camp weeks has grown from four to eight over that period.

With the network attention and awareness has come credibility. “To me, that’s the biggest piece,” said Monkaba.

“If we can say, ‘As recently seen on ’20/20,’ people tend to pay more attention,” Monkaba said. “Science editors have gotten more interested, so general media attention on WS went from slim to 25 touches.” Monkaba reckoned WSA had received nearly as much media attention in the past year as in the previous 29.

The most immediate impact has occurred in the medical community itself.

“It’s pieces like ’20/20′ ‘s that make all the difference,” Monkaba said. “Doctors see it, they go to the website, get interested.” Doctors’ and the public’s heightened awareness has caused more people to be diagnosed with Williams Syndrome, here and abroad, and at younger ages, she said.

In 1986, when Monkaba’s son with WS was a child, people with WS weren’t diagnosed until the age of 8. Now most kids with WS are diagnosed at around 4, she said.

Last fall the National Institute of Child Health and Human Development awarded a $5.5 million grant to scientists from several institutions and disciplines to study Williams Syndrome to learn how genes govern behavior. The study could produce drugs and therapies for those with Williams Syndrome. It could also help those with more-common disorders like autism (which affects between one in 150 and one in 500 newborns) by illuminating how genetic differences affect behavior, Monkaba said.

“Our 15,000 kids may hold the key to helping millions with autism,” Monkaba said. “What a great legacy!”

The best thing about blogs, they just keep going

Natalee Holloway Declared Legally Dead By Alabama Judge

Missing teen Natalee Holloway was officially declared dead of late in an exceedingly somber courtroom in Alabama, consistent with an attorney representing the girl's father.
Judge Alan King signed the declaration following a hearing attended by every Holloway's folks in Brimingham, consistent with Mark White, the attorney for Holloway's father. The declaration can then visit the Bureau for vital Records, which can prove a death certificate, White said.
Beth Holloway sat quietly at intervals the back of the court space for the continuing, consistent with her attorney John Q. King. She had been opposition the concept of declaring her daughter dead as a results of she was unwilling to present up the slight hope that Natalee is alive somewhere, King said.
The request for Holloway to be declared dead came from her father Dave Holloway who claimed at intervals the court papers that as a results of there is no proof Natalee is alive, the time has come back to declare her legally dead.

The father had previously told ABC News that his request was promped partly by his need to use Natalee's $2,000 school fund to assist her younger brother.
His attorney, Mark White, said these days that his consumer would get closure from the continuing and permit him to gift the death certificate as proof, ought to he would like it, that his daughter now not exists. White noted that managing insurance and different "red-tape" may be troublesome while not the declaration.
Natalee's mother disagreed.
"Beth's position is she has no proof or indication that Natalee remains alive, however absent any proof or indication that she is dead, she continuously needs to hold onto that slight glimmer of hope," said Beth Holloway's attorney, John Q. Kelly. "No mother likes to, while not proof, have her daughter declared dead. She needs to hold round her around in her heart."
Kelly noted that since nobody had any proof that Natalee may still be alive, it absolutely was a foregone conclusion that the petition would be granted.
Beth Holloway, when asked regarding her ex-husband's petition in September, referred to as Dave's actions "inexplicable" and said she was taken without notice that he had filed it.
Natalee Holloway Declared Dead these days
The court hearing comes each day once court proceedings in Peru where the most suspect in Holloway's disappearance, Joran van der Sloot, pleaded guilty to murdering a special girl. Van der Sloot entered the plea Wednesday and is awaiting sentencing by the Peruvian court. He has admitted to killing 21-year-old Stephany Flores, a Peruvian businesswoman, on May 30, 2010, the fifth anniversary of Natalee's disappearance.
Van der Sloot, a Dutch citizen, was never formally charged with Holloway's death in Aruba, however was arrested and held for questioning within the matter twice.
Beth Holloway has been relentless in her efforts to search out out what happened to her daughter, even slipping into a Peruvian jail to confront van der Sloot.
At one purpose, she agreed to a sting, seemingly complying with Van Der Sloot's demand for profit exchange for data regarding the situation of her daughter's body. The transaction was monitored by Aruba authorities, however van der Sloot left the island before the FBI filed extortion charges.
Natalee Holloway was on the last day of a graduation trip to Aruba together with her senior category at Mountain Brook highschool in Alabama when she failed to come back to her hotel. She was last seen in an exceedingly automobile with many individuals, as well as Van Der Sloot.

Rick Perry named Obama 'a socialist' in GOP debate

Rick Perry, gluttonous to animate his abatement presidential campaign, said Sunday he was abiding of one thing. “We accept a admiral who is a socialist,” Perry said in acknowledgment to a catechism at the aboriginal morning GOP agitation in Concord, N.H.

“I adios the apriorism that Obama reflects our founding fathers,” Perry said. “He doesn’t.”

It’s harder to appearance Perry as an annihilation but an reconsideration in New Hampshire -- and he seems to agree. The Texas governor is bound on South Carolina, and Sunday casting himself as the one tea affair applicant larboard in the chase in a bid to band up bourgeois votes in the South.

Rick Santorum wants those votes too, but the botheration is, as acclaimed by agitation adjudicator David Gregory, he has some accoutrements in his Senate voting record, including his vote for theMedicare decree biologic account amplification in 2003. The bill was anesthetized by a bipartisan Congress beneath Admiral George W. Bush with no agency to awning its amount in the budget.

“I said again that we should accept had a allotment mechanism,” Santorum said. “It was a actual boxy vote.”

Santorum said the bill aswell accustomed bloom accumulation accounts, a bourgeois abstraction that was “anti-socialistic” and partially privatized Medicare with the Medicare Advantage plan.

“There were a lot of acceptable things in that bill and there was one absolutely bad thing. We should accept paid for it,” he said.

Ron Paul, who, as a libertarian, actively opposes ample government programs, said Americans shouldn’t apprehend alms programs such as Medicare. “Entitlements are not rights. Rights beggarly you accept a appropriate to your activity and the rights to your alternative and you should accept the rights to accumulate the fruits of your labor,” he said.

Paul said a lot of federal spending usually apprehension up benefiting appropriate interests instead.

“Guess who gets the entitlements in Washington?” Paul said. “The big guys.

Kristy McNichol Comes Out of the Closet to Help Bullied Kids

Kristy McNichol, acclaimed for her roles on the TV alternation “Family” and “Empty Nest,” has appear out of the closet in an accomplishment to advice accouchement getting bullied.

McNichol, 49, has lived with her accomplice Martie Allen, for the accomplished two decades.


She absitively to accomplish a account regarding her feminine and allotment a photograph as a result of she is “approaching 50″ and needs to “be accessible regarding who i'm,”People Magazine reported.


She “is actual unhappy regarding children obtaining bullied,” her arranger Jeff Ballard told folks Magazine. “She hopes that advancing out will recommendation children who charge support. She would really like to recommendation others who feel totally different.”


McNichol was best accepted for her roles on the ball “Family,” that she won 2 Emmy Awards, and once “Empty Nest.” She has aswell starred in many films, together with “Little Darlings” in 1980 with Tatum O’Neal.


McNichol was diagnosed with bipolar ataxia in 1992, and once concluded her tv career. She currently lives in l. a. .


“She is actual blessed and healthy,” says Ballard, in step with folks Magazine. “And she enjoys active a actual clandestine life.

Jan Barker and Mary Flegal: Cookies support Girl Scouts' outreach

Biting into a Thin Mint does a lot more than satisfy a sweet tooth.

It also addresses urgent funding needs for outreach programs offered by Girl Scouts Heart of Michigan to girls and young women in the Lansing region. All of these programs focus on increasing self-esteem and confidence among one of our most precious resources - our girls and young women.

When guests gather to sample delectable desserts at the Girl Scout Cookie Bake-off Benefit on Jan. 18 at the Kellogg Center in East Lansing, they will be supporting much more than just a baking contest. What's really at stake is the future of girls whose families cannot afford Girl Scouting.

Will those girls, who need the leadership training that Girl Scouting provides, have the chance to be Girl Scouts this year?

Faced with the challenges of Michigan's sluggish economy, many families have cut back on after-school activities for their children. That's where GSHOM outreach programs come in. We believe that all girls, regardless of their circumstances, should have access to Girl Scouting and benefit from its youth development opportunities.

In the past, Girl Scout Outreach troops have served girls at the following Lansing area sites: Cavanaugh Elementary School, Cumberland Elementary School, Foster Community Center, Gier Community Center, Lansing Boys and Girls Club, LaRoy Froh, Lawton Elementary School, Letts Community Center, Red Cedar Elementary School, Shabazz Public Academy, Southside Community Center and Stockbridge Migrant Camp.

We provide Girl Scout troops in partnership with schools and agencies in areas where no Girl Scouts troops exist or where the girl population has transportation or financial challenges. We tailor these programs to meet needs identified by the girls and their leaders at the individual sites. Our most requested programs are "Living on My Honor" and STEM - Science, Technology, Engineering, and Math.

Living on My Honor is a curriculum designed to teach girls how to celebrate their similarities and differences while countering bigotry.

STEM provides exposure to the study of the sciences, technology, engineering and mathematics. By instilling confidence and a comfort level with these subjects early on we have found that girls entering high school are more likely to select these courses.

At the heart of all that we do is a commitment to empowering and challenging girls and young women to take on leadership roles.

Events like our "Bake Off" enable us to continue and broaden our services.

We hope you will join us to celebrate at our sweetest event and stay with us as we walk alongside our girls on their journey to success

NFL Playoffs Predictions: Lions Have The Firepower To Beat Saints

he Detroit Lions and New Orleans Saints will meet on Saturday night at 8:00 p.m. (ET) on NBC for the first NFC Wild Card game on the 2012 NFL playoffs schedule. The Saints are heavy favorites but don't count out the Lions just yet. Pride of Detroit, SB Nation's Lions blog, knows the Lions have enough firepower to keep up with the Saints if everything falls into place just right.

We asked Pride of Detroit to tell us why the Lions will win and also why they'll lose.

Why the Lions will win: The Lions will win because they have Matthew Stafford andCalvin Johnson. Few teams in the league have the talent to win a shootout with the Saints, but the Lions have enough firepower on offense to do just that. On defense, the Lions should be helped this time around by Ndamukong Suh, Louis Delmas, Lawrence Jackson and several other players who were out the first time the Lions played the Saints this season (Detroit lost 31-17), giving them a much better chance to hang with New Orleans' explosive offense.

Why the Lions will lose: The Lions will lose because they don't have a strong enough secondary to contain Drew Brees. Although injuries have been an issue lately and the return of Delmas will make a big difference, it's tough to look past what Matt Flynn did to the Lions in Week 17. The secondary has been very inconsistent as of late, and if Brees gets into another groove, it could be a long night for the Lions.

Check out SB Nation's NFL playoffs picks. Here is the complete 2012 NFL playoffs schedule.

Check out Canal Street Chronicles for the latest on the Saints and Pride of Detroit for the latest on the Lions, and head on over to the SBNation NFL news hub for everything you need to know about the 2012 playoffs.

In Republican debate tonight, Romney, Santorum have targets on backs

With at least 1 in 3 New Hampshire voters undecided ahead of Tuesday's first-in-the-nation GOP presidential primary, back-to-back debates this weekend could provide opportunity for the emergence of a clear alternative to front-runner Mitt Romney.

The former governor of Massachusetts comes into Saturday night’s debate with a lead of at least 20 percentage points – and a target on his back

so does former Sen. Rick Santorum of Pennsylvania, who in an 11th-hour surge fell nine votes short of winning the Iowa caucuses but who is only beginning to face the withering fire rivals dish out to front-runners. He can probably expect to see more of that in a nationally televised debate Saturday night and in a second matchup Sunday morning.

“The first rule in any debate is to do no harm,” says Tom Rath, a senior Romney campaign adviser in New Hampshire. Mr. Romney, who has built his campaign around jobs and the economy, can be expected to stick to those themes. “He is not going to get an answer wrong,” says Mr. Rath. “This state knows him so well.”

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