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Seeker Spotlight

Seeker Spotlight: Foundation for Prader-Willi Research

Shawn Johnson and Ellie

We recently announced a Challenge to advance research in childhood obesity with the Foundation for Prader-Willi Research.  The Challenge is very personal to the Foundation, which is composed of parents of children with Prader-Willi Syndrome.  A solution to this Challenge will have a direct and immediate impact on thousands of children who are currently suffering from the effects of the disorder.  We talked to Shawn about the Challenge, his personal experience with Prader-Willi Syndrome and the overall benefit the Challenge solution will have on the field of obesity research.

Hi Shawn.  Prader-Willi Syndrome (PWS) is a relatively rare disorder that may be unfamiliar to many of our Solvers.  Can you tell us a bit about it? What are the biggest challenges faced by children with PWS and their families?

Prader-Willi syndrome is a genetic disorder that occurs in approximately one out of every 20,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities. PWS is recognized as the most common genetic cause of life-threatening childhood obesity.  The syndrome is genetically characterized as an abnormality of chromosome 15.

Common characteristics of PWS include small hands and feet, abnormal growth and body composition (small stature, very low lean body mass and early onset childhood obesity), hypotonia (weak muscles) at birth, insatiable hunger, extreme obesity, intellectual disability and mental illness.

The symptoms of Prader-Willi syndrome are thought to be caused by dysfunction of a portion of the brain called the hypothalamus. The hypothalamus is a small endocrine organ at the base of the brain that plays a crucial role in many bodily functions, including hunger and satiety, temperature and pain regulation, sleep-wake balance, fluid balance, emotions, and fertility

The biggest challenge for kids with PWS is the extreme desire to eat.  This insatiable hunger greatly reduces their quality of life and impacts areas such as learning and social interaction.  We’ve all had times in our lives where we missed a meal; maybe you missed a lunch because you needed to make a deadline at work.  As the hunger continues and that feeling of starvation increases, all you can think about is getting your next meal.  It’s difficult to think of anything but food.  Image having that feeling of hunger all day and for the rest of your life, no matter how much you eat.  That is what our kids face.

The stress level for a family with a child who has PWS is very high.  A big part of the stress is the constant supervision required to keep our kids safe from food.  Because they have an inability to regulate their food intake, this task falls on the parents and others that care for them.  Parents often have to lock up their cabinets and refrigerators to manage food consumption.  Unfortunately there have been many cases where a child has died because of overeating and every parent is aware of this risk.  In our society food is a big part of our culture and trying to balance this while protecting our children from food is very difficult and stressful.

How has PWS affected you personally?

It was Friday, a couple of days before Mother’s Day when we got the diagnosis that Ellie (our first child) had PWS.  It was the hardest piece of information I have ever received.  I was completely confused and scared about what this diagnosis meant.  The physical and emotional pain I felt at that moment was like nothing I had ever felt before.  It’s hard to explain unless you have gone through it but when I heard the words Prader-Willi syndrome I knew our lives would never be the same.  She would never be able to have children, going to college was very unlikely and she would not be able to live an independent life.  Those life expectations that we take for granted were gone.  You don’t really realize how important they are to you until they are gone.  Life had changed.

Ellie WebEllie and our family have been through a lot.  She has required physical and speech therapy almost from birth to today.  Things that come easily for her peers and her baby sister are difficult for her.  She is almost 5 years old and as she gets older I sense that she realizes things are more difficult for her.  She has OCD and autistic like behaviors.  Though she is thin (because of her strict diet and daily physical activity) she is increasingly interested in food.  She talks about it a lot and it’s getting worse.  Food is becoming the most important thing in her life.  Before it was baby dolls, now it’s pizza or birthday cakes.  Almost as soon as she finishes her dinner she is asking her Mommy what’s for dinner tomorrow or when is her next meal.  As a parent, hearing the words “I’m hungry” from Ellie hurts every time I hear it.  And I hear it constantly throughout the day.  Ellie can’t help it but it doesn’t lessen the pain because I know it’s that insatiable appetite that will prevent her from living an independent life.

What would a solution to this Challenge mean for children with PWS? (more…)

Seeker Spotlight: London School of Hygiene and Tropical Medicine

Tom smiley kidsWe recently announced a Challenge with the London School of Hygiene and Tropical Medicine (LSHTM) to improve sanitary conditions for more than a billion people in the world using pit latrines.  We asked the Director of Sanitation Ventures, run by LSHTM, to provide a bit of background on the problem at the heart of this Challenge.

Hi Walter.  Can you tell us a bit about Sanitation Ventures and how you’re connected to the London School of Hygiene and Tropical Medicine?

Good sanitation is one of the greatest advances in public health, yet it remains unavailable to billions of poor people in developing countries. Around 1.7 billion people worldwide still use one of the most basic forms of on-site (non-piped) sanitation, the pit latrine. And they face a recurring problem: the contents don’t decompose fast enough or fully, and the pits fill up. This seriously undermines people’s health and quality of life.

Sanitation Ventures is a three-year project to tackle these problems, run by the London School of Hygiene and Tropical Medicine (LSHTM) and funded by the Bill & Melinda Gates Foundation. I was involved in developing the proposal with LSHTM and the UK development agency Oxfam. We’re a diverse team of business professionals, scientists, academic researchers and innovation specialists, who want a world where safe, sustainable sanitation is accessible to everyone.

Our approach is based on two core beliefs:

  • Many recent scientific advances, particularly in biotechnology, can be readily applied to improving sanitation in sustainable, affordable ways
  • Market-led approaches are the best way to provide novel, sustainable interventions to address key development challenges.

Building on the latest advances in science and technology, we’re generating new knowledge about pit latrines and developing innovations in on-site sanitation that will offer longer-lasting, affordable sanitation for low-income users. The BSF larvae approach is just one of several we’re exploring. We’ll then help make sure these solutions are successfully brought to market, where they can have sustainable impact on users’ lives.

Your Challenge is essentially seeking a way to keep pit latrines from overfilling, using black soldier fly (BSF) larvae.  How did this idea of using BSF come about and has it been proven to work elsewhere? (more…)

Seeker Spotlight: Consumer Electronics Association

Walter-Alcorn - CEAWe recently posted a Challenge with the Consumer Electronics Association and the Environmental Defense Fund as part of our EDF/InnoCentive EcoChallenge Series.  The Challenge seeks financially viable, environmentally-beneficial business models based on the repurposing of recycled Cathode Ray Tube (CRT) glass from used televisions and computer monitors.  We spoke with Walter Alcorn, Vice President of Environmental Affairs for the Consumer Electronics Association about the Challenge and the importance of solving this critical environmental issue.

Hi Walter – thanks for agreeing to talk with our Solvers today.  Your Challenge, New Uses for Recycled Glass, specifically calls for new uses for CRT screens, once the standard for televisions and other types of monitors.  How big a problem is used CRT glass for the environment?

The disposition of used CRT glass is a serious resource conservation and recovery issue.  Although used CRT glass is inert while still intact as old TV and monitor tubes, CRT glass contains a significant amount of lead that could be released into the environment if processed inappropriately or mismanaged.

Safe recycling is a big deal for my industry – the consumer electronics industry. Last April we announced the eCycling Leadership Initiative with an ambitious Billion Pound Challenge to more than triple the amount of electronics recycled annually by our industry from 300 million pounds in 2010 to one billion in 2016.

CEA eCycling ProgramThese billions of pounds of recycled electronics need to be recycled responsibly and the materials put back into productive use.  By weight, more than half of all collected consumer electronics are old televisions and computer monitors, and the heaviest component of most of those products are CRTs. For decades, CRT was the technology of choice in the display industry but during the past decade, demand for CRTs has dropped drastically as newer flat-panel technologies like LCD and plasma have become affordable and widely available. Until now most CRT glass collected for recycling was cleaned up and recycled into new CRT units, but the market for new CRT displays is now nearly gone.  Uses for CRT glass with lead (e.g., funnel glass) is particularly challenging.

Why did you choose to pose this Challenge to the InnoCentive Solver Network?

We needed raise the visibility of this situation beyond the recycling industry.  New applications for CRT glass, and potentially new processing technologies are needed to appropriately recycle this material.  We are excited about the encouraging response from the Solver community with more than 250 project rooms opened in the first 2 weeks.   Hopefully this is a sign that economically and environmentally viable uses for CRT glass truly exist.

What will you do with the solution once it has been selected? Are you hoping to take it forward and would you consider working with the Solver to further develop the solution? (more…)

Seeker Spotlight: Dr. Peter Salk and BeyondPolio

Peter Salk

We recently announced the launch of an exciting new Challenge series with BeyondPolio, an initiative of the Jonas Salk Legacy Foundation and the investment firm Spencer Trask to help support the global eradication of polio. Though rare in the Western world today, wild polioviruses are still circulating in a few remaining countries in Asia and Africa, where more than 1,000 new cases of paralytic polio are diagnosed each year.  The initial Challenge in the series Increasing the Affordability of Inactivated Poliovirus Vaccine in Low- and Middle-income Countries, seeks novel ideas to significantly reduce the cost of using IPV in countries where it is currently unaffordable.  The solution to this Challenge will form the basis for a series of larger Challenges, aimed at helping to eradicate polio completely and maintain success once eradication is achieved.  We asked Dr. Peter Salk, President of the Jonas Salk Legacy Foundation, to give us some background about the state of polio eradication and this Challenge series.


Hi Peter, and thank you for speaking with us today.  Your Challenge aims to help close the final chapter on eradicating polio.  People may be surprised to learn that polio is still a problem in some parts of the world.  Can you tell us why it has been so difficult to rid the world of this disease?

Let me give you some background so that an answer to this question will make sense.

Polio has been around for a long time (an Egyptian stele from around 1400 BC shows a man with the typical signs of a leg paralyzed by polio).  The disease became a huge problem in the early part of the last century when improvements in sanitation meant that children were not exposed to polioviruses while still protected by antibodies from their mothers.  As a result, large scale epidemics took place, the worst of which in the U.S. occurred in 1952 when nearly 58,000 individuals — mostly children — were paralyzed or died.

poliwho005

With the development of the inactivated poliovirus vaccine (IPV), which entered use in 1955, and then the live attenuated oral poliovirus vaccine (OPV), which was initially deployed between 1959-1963, it became possible to envision eradicating polio completely.  This goal is feasible since humans are the only natural hosts for polioviruses — unlike influenza, for example, which is carried by many other animal species.

A Global Polio Eradication Initiative, spearheaded by Rotary International, WHO, the CDC and UNICEF, was undertaken beginning in 1988, relying primarily on the use of OPV, which is inexpensive and easy to administer.  Since the start of that campaign, the number of cases of paralytic polio caused by wild polioviruses has fallen from approximately 350,000 cases per year around the world to fewer than 2,000 cases a year over the last decade.  That’s a decrease of over 99%.

Why did you decide to post your Challenge to the InnoCentive Solver network?

The BeyondPolio program is the brainchild of Kevin Kimberlin, Chairman of Spencer Trask & Co., the investment firm that is helping carry out the BeyondPolio initiative in conjunction with the Jonas Salk Legacy Foundation.  Kevin had played a major role in the HIV vaccine project my father had devoted himself to in the last years of his life, and he and my father had a close and meaningful relationship.  The idea for using InnoCentive as part of the BeyondPolio initiative derived from Spencer Trask’s familiarity with InnoCentive as a result of having helped with its initial financing, and from Spencer Trask’s awareness of the track record of effectiveness of InnoCentive’s Challenge Driven Innovation programs.  The InnoCentive platform appeared to be a good way to get the word out to a large number of creative and intelligent “Solvers”, and it seemed well-suited for BeyondPolio’s series of Challenges.

OK, so if the eradication program reduced the number of cases of polio in the world caused by wild polioviruses by 99%, that means there still is another 1% of the way to go.  Why has it been so hard to get the job finished over the last 10 years?

(more…)

Seeker Spotlight: Edmond J. Safra Center for Ethics

Safra - Neeru PahariaInstitutional corruption is on the rise.  Illegal corruption is relatively simple to identify and combat – dumping of chemicals into water supplies, bribes offered and accepted, election fraud.  However, a different type of abuse has been getting increasing attention in the media, which often involves acts that are technically considered legal, but can be just as damaging, to employees, constituents and the organization’s reputation. Recently the Edmond J. Safra Center for Ethics at Harvard University, an organization founded by professor and political activist Lawrence Lessig to study institutional corruption, turned to the InnoCentive Solver community to help develop systems that expose corrupting forces within public and private institutions. We talked to Neeru Paharia, Director of Research for the center, about this particular Challenge.

Hi Neeru – thank you for talking with us today.  Your Challenge focuses on ideas for a system to monitor institutional corruption.   What would an ideal solution look like?

We hope a solution would outline how to collect and present relevant information about an institution to constituencies in a meaningful way so that 1. they can make better personal decisions, and 2. the institution now has an additional incentive to serve its constituents.

What would you consider to be the biggest hurdle to monitoring corruption?

Watchdog groups, the media, auditors, and regulators have all been deployed to monitor corruption. However all these groups are also vulnerable to capture. For example, in most cases financial auditors are employed by those whom they are auditing. What is their incentive to find fraud when their future business is also at risk? Thus, we are excited about the possibility of data transparency, analysis, crowd sourcing, etc. to take on a monitoring role. With technology and the internet, this is an emerging area and there are some promising projects already underway. Organizations like maplight.org, guidestar,org, and even yelp.com in the case of business are collecting and exposing data in a meaningful way that is of use to constituents.

Is there a profession or industry that you think is in most dire need of this solution? (more…)