Tuesday, October 30, 2012

Special needs Halloween party forges bonds

As strains of Michael Jackson's "Thriller" pulsated through the makeshift dance hall Saturday, the low rumble of dancing feet picked up the pace, as costumed revelers stomped and swayed to the music.

On the dance floor in a converted garage, Popeye, Jack Sparrow, Batman and other pop culture figures cut the rug. Their moves were energetic — hands hoisted and waving, hips undulating — as they sashayed beneath giant spiders and other creepy crawlies.

Despite all the Halloween hallmarks being in place — costumes, dancing and spooky decorations — this was a Halloween party like no other. Behind the masks and costumes were people with special needs, who regularly come together to have a good time.

In its third year, the Halloween party is the brainchild of Mary Siebert, a postal worker whose daughter, Madeline, 17, is developmentally delayed. Siebert holds the party at her rural Ridgefield property, which she decks out in Halloween ornaments. There's a haunted chicken coop, with a Freddy Krueger mannequin hiding in the corner, and even a spirit-infested forest.

Watching the festivities, Siebert explained why she hosted the event.

"These kids are separated from the start (of their lives)," she said amid the ruckus. "So it's hard for them to make friends."

But inside Siebert's garage there are dozens of friends, laughing and sharing inside jokes. Many of them have grown up together in a tightly knit community that feeds off gatherings and events.

More than 60 people came to Siebert's gathering Saturday from across Clark County.

The special needs community in Clark County is a close one, Siebert said. That's why the idea for the Halloween party wasn't hers alone. She received help from Shauna and Jason Scott, who serve as caregivers for a girl with Down syndrome.

They're all heavily involved in the Special Olympics,

with Jason Scott coaching various sports, including basketball and softball.

The activities are important both for people with special needs and their caregivers, who bond over their shared experiences, Siebert said.

"You get really close to the other parents in this group," she said, adding that it's important for networking purposes. "Sometimes, you can feel like you're really isolated in what you're experiencing."

The caregivers share tips on how to look after young people with special needs. Together, they've built a network that's based on shared experiences, Siebert said.

Word of the gatherings often spreads through Sheri Bousquet's Special Olympics gymnastics class, held once a week at the Naydenov Gymnastics & Fun Center in Vancouver.

Bousquet has been coaching gymnastics for the Special Olympics for years. She has 17 participants, who range in age from teenagers to people in their 30s, all of whom have special needs.

For Bousquet, the goal of her gymnastics class is simple: "We want to make sure disabled people have access to what everyone has access to," she said.

At the Halloween party, that meant music, dancing and fun among people who know each other well.

Across the dance floor, a voice rang out. "What's up, girlfriend?" The voice belonged to the party's disc jockey, Mike Nguyen, 27, who seemed to know everyone in the building. He was calling out to one of his many friends who just walked through the doors.

Like many of the attendees, Nguyen has Down syndrome, a chromosomal condition that can cause both physical and mental health problems for those who have it.

But Nguyen functions at a high enough level that he drives to events, where he works spinning tunes.

Although he's only worked as a DJ for four years, Nguyen manipulates the digital turntable like a professional, mixing the tunes effortlessly.

He regularly plays music for dances at the Luepke Senior Center. The Halloween party gives him the opportunity to incorporate some different songs into his repertoire.

"Some people are picky customers. But most are easy to please," said Nguyen, adding that he loves to play the dances. "I try to be a fun guy."

For Richard White, whose son Andrew, 31, has Down syndrome, the closely knit special needs community has provided an outlet he never thought existed.

Andrew participates in gymnastics and regularly attends dances at the Marshall Community Center.

White said he was nervous to let Andrew participate in the dances at first. They were so different from what he expected.

"It just blows your mind," White said. "But now I see beauty in it. It's just a slice of life you can't experience anywhere else. At first I thought, 'no, no, no — I can't let my son go here.'"

As partygoers cut loose to Trace Adkins' "Honky Tonk Badonkadonk," White said he quickly got over his concerns. White said he witnessed so much diversity and acceptance at the dances that he eventually wholeheartedly embraced them.

Sunday, October 28, 2012

OpenX Acquires JumpTime

Publishers, in print and online, have long sold space to advertisers based on the perceived value of the publisher’s audience. The quality of that audience, in turn, was based on its location, income, education level and propensity to buy the product the advertiser sold.

Digital advertising has grown in sophistication, allowing advertisers to tailor messages for specific audiences and to buy those audiences. Still, technologies that inform publishers of the value of editorial content have not been widely available.

On Monday, OpenX Technologies, a provider of digital advertising technologies, will announce that it has acquired JumpTime, a company that helps publishers determine what each piece of their digital content is worth.

Tim Cadogan, the chief executive of OpenX, said the merger would provide technology that makes it easier for publishers to “connect the left brain and the right brain of the publishing organization.”

“You have to produce content that is exciting,” Mr. Cadogan said. “The way you make money is advertising. Those two worlds need to be connected.” Instead of focusing on pages that generate high C.P.M. rates, or cost per thousand views, publishers should focus on content that encourages users to go deeper into a site and spend more time there, he said. “If the publishers are able to create more engagement on good content, then those are great places to advertise,” he said. “That’s where you want to be.”

Using JumpTime technology, publishers have access to a dashboard that shows, in real time, the value of each photo, article and other content on a Web page.

The economics are simple, said Michele DiLorenzo, the senior vice president of OpenX and former chief executive of JumpTime. A publisher can focus on attracting users to a piece of content that generates $18 for every thousand views, or they can focus on drawing users to many pieces of content that have lower individual C.P.M.’s — say five pieces valued at $5 each — but can end up generating a higher total revenue.

“If you only think about the immediate value, you don’t know what value is. You’re going to consistently make mistakes,” Ms. DiLorenzo said.

Wednesday, October 24, 2012

This is a good time for unions and developers to cooperate

I was practically giddy when I heard the news that Peter Green and his two handsome sons, Alexander and Andrew were buying the Hamilton Princess.  There’s nothing like the winning combination of big cash and optimism with a pinch of moxie. Of all the gin joints, in all the towns, they made an investment in their own backyard. They bought local and despite the doom and gloom, they still believe in Bermuda.

Believing in Bermuda and Bermuda’s potential is not the same thing as believing that the recession is near an end. The Green family did what smart business people do and took the long term view.

While an economic recovery is possibly three years away, the family has rightly anticipated that construction materials to renovate and expand the hotel will be less expensive in a competitive market. Despite our shrinking international business sector, the Hamilton Princess still attracts business executives for its convenient location.

But perhaps the most compelling reason for purchasing the Princess is the Green family’s love of Bermuda since Alexander and Andrew are Bermudian.  Their commitment to Bermuda isn’t just about deal making. This is certainly not the case when other investors come to the island to look at properties.  There’s no personal history to help persuade them that investing in Bermuda feels right. It’s whether the numbers are right.

  The real deal breaker from preventing hotel projects from going forward is the cost of labour. Bermudians, compared with their counterparts in the rest of the world, are paid handsomely. Yes, the cost of living is expensive in Bermuda but it is elsewhere, too.  When potential investors/developers contemplate building a new hotel in Bermuda the numbers don’t add up.

Forget for a moment the actual cost of building a hotel which will be extraordinary, think about the day in day out costs of labour.  After you’ve bought the construction, factored in the out-of-this-world electricity costs, bought the soap, the towels, the bed linens and you name it, hotels then have to pay staff. Bermuda’s tourism season, at least right now, is too short to make the high cost of construction and staff worthwhile.

Want to see hotels get built?  This is a perfect time for union leaders to sit down with their members and discuss how they can really compete in a global market. It’s time to throw out the old assumptions about what you deserve and think about what you need and what could make you whole in this economy. It’s time to contemplate the value of zero. Zero in your bank account, zero jobs and zero ability to pay your bills.

Union leaders can use their skills and pre-negotiate with developers and investors on behalf of hotel, trade and construction workers for wages and benefits.

This is an opportunity to work in partnership with developers and investors towards the mutual goal of getting Bermudians working.

Monday, October 22, 2012

Gates of Heaven polling location will remain in place

When Gene Devitt voted in last spring's primary election at the Gates of Heaven Synagogue, he was dismayed to find that the bathroom was at the bottom of a narrow staircase.

"I noticed a man in a wheelchair and a woman with a cane that I knew," says Devitt, chairman of the Mansion Hill Neighborhood Association. "I measured the staircase and you couldn't even get the wheelchair carrying it down. The woman that has the cane said that if she could go down the staircase she’d worry about falling."

Devitt had other problems with the historic building, located by James Madison Park. The building is small, which means that people could end up waiting outside if there is a line to vote.

After speaking with seniors and people with disabilities in his neighborhood, Devitt tried to get the polling location changed. He says he brought his concerns to Capitol Neighborhoods, Inc. and to his alderwoman, Bridget Maniaci.

Maniaci refused to advocate for the change until she was sure that Gates of Heaven did not meet the standards under the Americans with Disabilities Act for polling places. Although the Common Council makes the final decision, a proposal to move a polling location needs to come from the area alder or the mayor's office.

"I told him flat out, 'Gene, I'm not going to move the polling location for 3,000 people just because you want it somewhere else, without more information,'" Maniaci says.

Gates of Heaven has been a polling location for years but Devitt, until last year's redistricting changed city ward boundaries, had voted at the downtown branch of Madison College.

Maniaci says she proposed renting an ADA accessible portable toilet for elections, although an ADA bathroom is not required at a polling site. She also met with the city Department of Civil Rights to discuss short and long-term solutions.

Devitt and Maniaci also identified and vetted alternate locations with City Clerk Maribeth Witzel-Behl and Jason Glozier of the Department of Civil Rights. But none turned out to be easily available according to both Devitt and Maniaci. Witzel-Behl did not return multiple calls for comment.

Devitt wanted the location changed to Madison College's downtown campus. "When I voted [there] with my mom, who was handicapped at the end of her life, it took us an hour and thirty minutes," Devitt says. "But it was all inside, it's air conditioned, it's heated, they have seats; it's a nice place. She felt safe there."

But Maniaci says the campus is outside of the ward boundaries and not centrally located.

"If we're going to move it out of district, I would argue that there are better locations out of district, something like the Children's Museum," says Maniaci. The Madison Children's Museum, though still outside the boundaries, is closer to the center of the ward whereas the Madison College campus borders the ward's southwest corner.

In the face of Maniaci's opposition, Devitt tried to work through city staff. Just last week Maniaci was informed that the City Clerk, Parks Department and Mayor's office intended to move the polling location away from the Gates of Heaven.

But it was too late. Maniaci consulted with City Attorney Michael May who confirmed that a polling location cannot be moved 30 days before an election except in the case of an emergency.

I advised those who were interested that [the Gates of Heaven] didn't qualify for moving it at this time and that the [Government Accountability Board] agreed with us," May confirms. "The decision was made not to move."

"If this was something that the Clerk believed in, she had every opportunity to see this changed in a timely fashion and that didn't happen," Maniaci says. "To now come and three weeks before the election when this has been the long standing polling location and try to just lift it up to some undetermined location is ... wrong."

Wednesday, October 17, 2012

NextGxDx Launches Physician Portal to Streamline Genetic

Healthcare information technology startup NextGxDx has released a free, online platform for physicians through which they can search for genetic tests, compare tests offered between different labs, order a test, and receive results.

As molecular diagnostics become more integral to the delivery of personalized care, privately held NextGxDx launched this platform in an effort to streamline the workflow for busy physicians who need to order genetic tests for their patients. The platform lists more than 10,000 genetic tests, including those that are approved or cleared by the US Food and Drug Administration as well as those that are offered through CLIA-certified labs.

In a white paper that was released in conjunction with the physician platform, NextGxDx pointed out that although there are 10,000 genetic tests on the market, nearly 22 percent of molecular targets are available for testing through only one lab. "Integrating the rapidly growing world of genetic diagnostics with the day-to-day operations of a busy clinic is one of the most pressing challenges in medicine today," NextGxDx states in the white paper. "Despite the powerful information provided by genetic testing, and the perceived clinical benefits, barriers still remain for full adoption into clinical practice."

In a recent report, seven genetic counselors from ARUP Labs reviewed test orders for complex biochemical, cytogenetic, and molecular genetic tests between February 2010 and December 2010, and found that one-third of the cancelled tests were due to the physician ordering the wrong test.

NextGxDx is hoping to provide doctors with the necessary information and tools about genetic tests to avoid such errors. "One of our primary goals is to simplify the workflow and make genetic testing simpler for community doctors to use," Judsen Schneider, NextGxDx's scientific director, told PGx Reporter. "By supplying decision support tools to complement these genetic tests, we hope to increase the likelihood that community physicians will find them more useful in their practice."

Once physicians order tests through the web-based platform, NextGxDx generates a requisition form and processes the order. Then the order form is sent out of the lab for analysis. Test results are reported back to the physicians through the platform website.

Although there is no cost to physicians for accessing the NextGxDx genetic testing platform, labs pay a fee to include their test information in the service. According to Schneider, labs are motivated to submit their tests to the service because they recognize the opportunity to provide physicians with information about their tests and their labs.

"We charge our partner laboratories a small implementation fee and ongoing maintenance fee to cover the costs involved with linking their test catalog up to our database," Schneider said. "Labs also pay a service fee to NextGxDx for tests ordered through the NextGxDx platform." The test information included in the platform comes from the labs and diagnostics providers.

The company is planning to market the platform at medical conferences, where healthcare providers can test out the system. For example, it will be demonstrating the platform at the annual education meeting of the National Society of Genetic Counselors in Boston and at the Child Neurology Society Annual Meeting later this month, as well as at the American Society of Human Genetics Annual Meeting in November.

It took NextGxDx more than a year to develop the physician platform, which it beta-tested within large physician groups, labs, and among researchers to ensure that the user interface fit the healthcare professional's workflow.

"Much of our early work was spent with the neurology and medical genetics communities, due to the fact that they see by far the greatest number of rare genetic disorders," Schneider said. "Since then, our catalog has expanded to cover genetic tests throughout all of medicine."

In surveying the barriers physicians face in performing genetic testing, NextGxDx identified inefficiencies in reporting test results as one of the major roadblocks. Despite advances in digital technologies, most labs still use direct mail and faxes to report test results so the company believes that it can make the delivery of test results more efficient through its platform.

"One of NextGxDx’s services is to provide test results back to physicians through our portal. We have seen many systems that can take upwards of a week to get results from a reference laboratory into the [electronic medical record], and into the hands of a clinician," Schneider said. "Our process is significantly faster. Upon completion of a test, laboratories upload the results to our site, and those results are then immediately available to the clinician."

The NextGxDx platform is encrypted to protect the privacy of patients, and test results are stored in compliance with HIPAA regulations. Although test results are reported electronically, currently they aren't incorporated into patients' EMRs.

Besides NextGxDx's platform, there are a number of other genetic testing-focused repositories that allow healthcare providers to find out about available tests. GeneTests is a catalog of tests operated by the University of Washington, while the National Center for Biotechnology Information has recently launched the Genetic Testing Registry. The University of Utah offers the Genetics Home Reference, a curated educational website about genetic tests and conditions for a general audience.

Monday, October 15, 2012

Rolling Stones announce just 4 concert dates

The legendary band, celebrating its 50th anniversary, said Monday it would return to the stage this year with four concerts in Britain and the United States. The shows will take place on Nov. 25 and 29 at London's O2 Arena, followed by gigs on Dec. 13 and 15 at the Prudential Center in Newark, New Jersey, just outside of New York.

Those were the only dates announced, which doesn't sound like good news for Bay Area fans. Even if it is their 50th anniversary, it doesn't sound like they going to replicate that outside-of-Livermore thing for old time's sake.

The shows will mark the first time in five years that the Stones have performed live, with Mick Jagger, Keith Richards, Charlie Watts and Ronnie Wood all coming together once more. The band said it was the "crowning glory" of celebrations marking its 50th anniversary of its first gig.

"Everybody loves a celebration, and London and New York are two good places to do it in!" Jagger said in a statement.

Their last global tour, "A Bigger Bang," earned more than $500 million between 2005 and 2007.

The Stones are releasing "GRRR!" in November, a greatest hits collection that includes two new songs, "Doom and Gloom," which debuted last week, and "One More Shot." Both were recorded recently in Paris and represent the first new recordings since the 2005 album "A Bigger Bang."

The tour comes despite some famously testy times. Richards and Jagger have been creative catalysts and sparring partners -- sentiments aggravated two years ago when Richards published his autobiography "Life," in which he wrote unflattering things about Jagger's pants.

They've nonetheless appeared amicably together during events that marked their 50th anniversary. A documentary about the band, "Crossfire Hurricane," premieres at the London Film Festival on Thursday.

In another milestone marking their five decades of music, the Museum of Modern Art in New York will host "The Rolling Stones: 50 Years on Film," a retrospective chronicling the band from the mid-1960s until today. This exhibition will be open Nov. 15.

"Nowadays it's harder because everyone is on Facebook and everyone knows where you are all the time, and everyone's twittering," she is quoted as saying in author Talia Soghomonion's e-book, "Robert Pattinson, Kristen Stewart, Taylor Lautner -- In Their Own Words."

"Like I'm going to die because somebody is going to say where I am and somebody is going to kill me. Someone's going to Twitter my location and then it's going to be like, boom," she explained.

Neither Stewart nor her (maybe) boyfriend Robert Pattinson has an official Twitter account or Facebook page. Which makes sense, since plenty of "Twiilght" fans think vampires and werewolves are real. But Stewart does seem to understand that this whole Internet thing can be advantageous in some ways.

"I actually think too much of anything can be scary, but at the same time it's also an opportunity. I mean mass communication is a good thing. It's actually a really great thing, it's just scary," she explained.

This isn't the first time Stewart has complained about the Internet being bad.

"You can Google my name and one of the first things that comes up is an image of me sitting on my front porch smoking a pipe with my ex-boyfriend (Michael Angarano) and my dog. It was the day ('Twilight') came out.

Thursday, October 11, 2012

Time takes on a different dimension in Africa

The Rolling Stone's song "Time Is on My Side" could be a continuous theme for many first time visitors now living in Malawi.  Getting here with the Peace Corps was such a long ordeal and there is no reasonable way to prepare for the journey.

The obvious challenges of distance, a different culture, climate and language are usually identified at the top of the list.  Perhaps it's all those items in the fine print or less visible that are so easy to miss.  Even living in the village setting during training phase failed to hammer home the adjustment that would be required in two areas.

The overlooked items are transportation and time.  Malawi transportation is a worst case nightmare.  Every person in this country can add a travel woe to any story.  Even bring up the subject can cause a seismic response.

Time is the other issue sure to elicit a reaction of some sort from most.  Wasn't it Albert Einstein who suggested that time is relative to how fast we are traveling?  My question is simply "relative to what"?  In Malawi using the word clock and time together constitutes an oxymoron.

Perhaps there is nowhere else in the world where time takes on the meaning it has here.  A better way to state the obvious is simply that time does not exist here in the way that is familiar to many of us.

There is an expression that I've heard called "Malawi time".  It is simply code to add anything from 10 minutes to five hours for a designated time.  When someone says "I will meet you at 3 o'clock" it can really mean 3:10 or 8:00.  And the more requests for accuracy seem to generate more creative responses.

My classic story is the after dark mini-bus flat tire on the M1 mountain road between two cities.  When looking for a time when the repair would take place the answer was given "when someone comes to fix it".  And that would happen when the mechanic arrives.  That could be ten minutes, two hours or maybe a day. 

Perhaps this week seemed to test the limits of knowledge about time here.  Understanding time in Malawi is learned skill that opens a host of experiences.  With the right attitude everything gets put into perspective.

It becomes a balance of when something actually happens and living in the moment.   So many of us we are living in the next moment or moments because we are too busy getting to or going somewhere.  Tomorrow becomes more important than today's moments.  

This week's  project required more travel and in Malawi when you arrive can be a challenge.   An hour's ride is never a sure thing.  My journey was to begin with a Monday morning meeting (Columbus Day here is not on the Malawi holiday calendar).  One of the two participants didn't show for the early meeting and it had to be rescheduled for two o'clock the same day a total of 5 hours later.

It made no sense to travel an hour and half back to my home location.   I walked over to the local prison to greet the superintendent who is a friend.  There is much to be said for visiting anyone especially when there isn't a reason.  Should I ever be involved with any prison projects in my own area the superintendent's advice will be greatly appreciated.  There was no place else I needed to be and the rescheduled meeting was set for 2 o'clock.  

A quick text to two fellow Peace Corps workers resulted in an unscheduled plan for an early lunch at a local restaurant.   The restaurant sits at the foot of the nearby mountain range in a garden like atmosphere where time seems to stand still.  Being so early meant we were the only customers.

A first order of coffee was followed by some quick menu selections.  We jokingly remarked that the atmosphere is in stark contrast to other Malawi locations.  After an hour of waiting it became apparent that the kitchen was in no rush to serve us.  Maybe in another location or another setting we would have marched into the kitchen demanding speedier service.  We were content to just and review reasons why each of us had traveled with the Peace Corps to Malawi. 
Discussed were our candid observations about life in Malawi.  The conversation drifted into what we liked about Malawi and the most challenges.   We even speculated about our lives after the Peace Corps.  Surprisingly not one of us made a move to the kitchen with a demand of faster service. 

When the food finally came more than two hours later we quickly ate and were on our way.  Somehow we had slipped into the moment and simply enjoyed the rare opportunity to listen to each other and find our differences and our common connections.  There were still no other customers. There was no other place we had to be at the moment. 

As it worked out the 2:00 meeting did not happen because the missing member never showed and the meeting got rescheduled for the next morning. 

On Wednesday my plan was to accompany my board chairperson to his two day teaching assignment at a college an hour and a half north of the capital.  It meant leaving Ntcheu at 6:00 to be in Dedza by 8:00 for the start of our ride north.

I got a ride north from a Zomba Pakistan butcher who has lived in Malawi for the past seventeen years.  Time stood still as we talked about our experiences and differences and our favorable views of Malawi.  We were in no rush to have the ride over and we enjoyed the moment.  I had arrived ahead of schedule for our trip north with my board person.

The 8:00 AM start off time became 9:00 but only to begin a limited search for scarce diesel fuel.  We headed south to meet up with his colleague in a neighboring market place.  The suggested 10 minute stop over became an hour of sitting and waiting while he conversed in his colleague's car.  And simply where did I need to be or need to go?  Nowhere.  My rush to head north was mine alone.

The ride was further delayed by a stopover with some local villagers who needed some advice on securing funds to put a roof on a church.  For these villagers this was a critical issue and there was no other place I needed to be but there just listening to their immediate requests.

Maybe this was my once in a life time to see these villagers and never again. We eventually arrived at our destination perhaps later than expected but time was not the critical factor since living in the moment was more important.

Maybe there was some unknown futuristic vision taking place when in the late 1960's I stopped wearing a watch.  All those years were preparing me for now when the only important time is the moment at hand.

For most of us the business of the next event drives us forward and keeps us so distracted that slowing down and living in the present is really difficult.  What do I need to be doing right now?