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Posts Tagged ‘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: World Resources Institute (WRI)

Smoke on the HorizonThe World Resources Institute (WRI), a global think tank that works with organizations to help solve urgent environmental challenges, recently completed an InnoCentive Challenge aimed at helping local communities across the globe adapt to changing climate conditions.  We talked with Eliot Metzger at WRI about the Challenge and the winning Solutions.

Hello Eliot.  Thanks for coming back to tell us about your completed Challenge.  Perhaps you can start by reminding our readers about the goals of the Challenge.

One of our primary goals at WRI is to help people adapt to the impacts of climate change and advance innovative solutions that prevent further damage to the global climate system. With this Challenge, we were seeking creative ideas for communicating local needs in communities dealing with climate challenges they have never seen before.

Communities across the globe are confronting more extreme weather, like heat waves, droughts, and floods.  They also are facing more subtle and long-term impacts, which can be equally disruptive. Sea level rise is one well-known example, but there are also food and health risks as a changing climate creates conditions for increasing pest populations or insect-borne disease.

These are global and regional disruptions creating new needs at a local level. A community in Ghana may be looking for new energy sources to compensate for the hydroelectric power supply that is less reliable because of changing rainfall patterns. A coastal community in Vietnam may be in need of infrastructure to deal with increasing tidal floods because of rising sea levels.

We asked for ideas that could leverage new communication models and advances in information and communication technology to meet these needs. Our challenge to the InnoCentive Solvers was to come up with ideas for a communications platform that linked communities, governments, and companies. We want to see information flow from the local level to inform new approaches for national-level decision making and new goods and services from the business community.

This was an Ideation Challenge, and you made four awards.  Tell us your thinking about that decision.

Well, first of all it was difficult to pick just one idea.  There were several that stood above the rest.  And among those, each offered something slightly different.  I can’t say that any one of the solutions we reviewed had exactly what we were looking for, but nearly all the proposals had at least a few interesting ideas.

There were four ideas that were particularly comprehensive, creative, and still quite practical. We decided to recognize and reward each of those Solvers. It was nice to have the flexibility to spread the award money among several good ideas.

Can you share with us some of the most compelling ideas that were awarded? (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…)

Seeker Spotlight: Life Technologies

Today we released a new round of four Life Technologies Grand Challenges. Matt Dyer, Ph.D., Senior Product Manager at Ion Torrent answers some questions about the Grand Challenge Program and offers tips for interested Solvers.

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Can you tell us a bit about the Life Technologies Grand Challenge Program?

The Life Technologies Grand Challenge Program consists of three separate Challenges, each of which has a $1M prize associated with it. The three Challenges are Speed, Scalability, and Accuracy. The speed Challenge is centered on going from genomic DNA to pressing the start button on the Ion Torrent Personal Genome Machine(TM). If a Solver can do that in half the amount of time as we can do it, they win $1M. The focus on the scalability Challenge is to get more data from a single run of the PGM either by generating more reads or by my making the reads longer. If a Solver can double the throughput of a single run, you win $1M. Finally, the accuracy Challenge. The accuracy Challenge is unique in that it is purely a bioinformatics Challenge and Solvers don’t need to have a PGM to participate. The goal here is to take a subset of reads in which the bases calls are 99% accurate and develop a better signal processing algorithm to make them 99.5% accurate. The Solver that can cut the error rate in half wins $1M.

In general the Life Technologies Grand Challenge Program is a typical crowd sourcing initiative (e.g., Netflix), but with one subtle difference. Since these Challenges all involve core pieces of the platform, we continue to work on them along side Solvers. Each quarter we release the current benchmarks along with protocols and software used to generate them and Solver have three months to work on and submit a solution. At the end of the three month if the Challenges remain unsolved, we update the benchmarks and the process starts over.

Wow, $1M that’s a pretty big prize pool? Why are these Challenges so important to Life Technologies?

It is about shared innovation, semiconductor sequencing in and of itself is built on innovations that happen from many others across a wide range of industries. For example the computing industry, semi-conductor industry, sequencing manufacturing industry, etc. Additionally, a lot of what we are doing is open source like our software where we release our source code. The Grand Challenges represent a continuation of shared innovation. We realize that there are a lot of really bright people in this world. Why not empower them and leverage their insights and innovation by building a community and platform where they can openly share their ideas.

(more…)

Seeker Spotlight: JDRF

We recently announced that JDRF was partnering with InnoCentive to find a better way to treat diabetes using a glucose-responsive insulin drug.  We asked Dr. Sanjoy Dutta, Director of Glucose Control at JDRF to tell us a bit about this Challenge and the overall state of diabetes treatment today.

Sanjoy DuttaThank you for joining us today, Sanjoy.  Can you tell us a little bit about JDRF and the role you play in combating type 1 diabetes?

JDRF is committed to curing, treating, and preventing type 1 diabetes. While we work toward a cure, we strive to help people with type 1 diabetes live better, longer, healthier lives – people at all ages and at all stages of the disease.  They are the reason JDRF exists, and remain at the forefront of everything we do.

A vital part of the fight against type 1 diabetes is developing better treatments to help people live better with the disease while we search for cures and preventions. And that is why JDRF is taking strides to make managing the disease better, safer, more efficient – because it’s not an easy disease to live with.

JDRF is the largest charitable funder and advocate of diabetes science worldwide, and since our founding in 1970, we’ve awarded more than $1.5 billion to diabetes research. In fact, more than 80 percent of JDRF’s expenditures directly support research and research-related education.

Your Challenge is seeking ideas for the development of glucose-responsive insulin.  What is glucose-responsive insulin and what kind of impact would the discovery and development of glucose-responsive insulin have on people with diabetes?

JDRF is utilizing InnoCentive’s Challenge platform to create a tightly controlled, glucose-responsive insulin drug for patients with insulin-dependent diabetes.  This will enable improved glucose control, decrease or eliminate the need to test or monitor blood glucose levels, improve quality of life for people with the disease, and reduce their chances of short- and long-term diabetic complications.

Such a glucose-responsive insulin holds the potential to transform the lives of the hundreds of millions of people with diabetes in the world who are dependent on insulin (both type 1 and type 2). Working only when the body needs it, glucose-responsive insulin would deliver the precise amount of insulin in response to circulating glucose levels, to control and maintain normal blood glucose levels throughout a daily routine, with once-daily or less frequent dosing in people with insulin-dependent diabetes. This novel form of insulin would not need to be calibrated with carbohydrates or blood glucose testing (compared to current administration of insulin multiple times or continuously in a day).

Currently, all insulin treatments for people with diabetes release the same amount of insulin at fixed times throughout the entire body.  However, in people without diabetes, the body secretes insulin in proportion to local blood glucose levels, delivering it to the body’s tissues and organs at the appropriate times, according to their specific needs.  This helps the person without diabetes to maintain a target blood glucose level throughout the day.  Glucose-responsive insulin could therefore be a transformative solution, vastly improving the quality of life of people with insulin-dependent diabetes.

Can you talk about the larger universe of diabetes research?  Will there ever be a cure for diabetes? (more…)