Here's a blog from FPWR Board member Shawn Johnson about the "PWS Research Challenge: Advancing Appetite and Satiety Research", which FPWR has launched in collaboration with InnoCentive. Shawn championed the idea of a crowdsourcing approach to generate new insight into hyperphagia in PWS:The Foundation for Prader-Willi Research was founded on the simple yet powerful belief that through research, the challenges of PWS can be eliminated and that this research is so important to improving our children’s lives. It’s this belief that initially drew me to FPWR and continues to motivate me to do whatever it takes to help my daughter Ellie and others with PWS.
Because I believe so strongly in the power of research, I’m extremely excited that FPWR has just launched the first PWS Research Challenge!
This Challenge, which is to identify insights into the mechanisms of hyperphagia in PWS and provide possible interventions/treatments, is something we all want solved. Hyperphagia and the resulting behavior issues is one of the areas that greatly reduces their the quality of life. By gaining a better understanding hyperphagia and possible treatments, we hope to allow people with PWS to reach their full potential.
So what exactly is a research challenge? Think of it as a marketplace, were a problem or issue is posted and people are encouraged to submit their solutions to try to solve the problem. The person(s) who solves the problem is then awarded a prize. We hope that this crowdsourcing approach (which is the act of sourcing tasks traditionally performed by specific individuals to a group of people or community (crowd) through an open call) will accelerate research and provide new insight into PWS by allowing people from multiple disciplines and with different perspectives to look at PWS.
The launch of this challenge comes full circle for me. Several years before Ellie was born I read a great book called Wikionomics. It described a new concept called crowdsourcing that was going to change the world. Crowdsourcing was impacting how our businesses and institutions are organized and how they perform their activities. I became fascinated with this topic and in particular with the concept that research and development was no longer solely done within the walls of a company but moving towards crowdsourcing. Also mentioned in this book was an innovative company called InnoCentive, a pioneer in crowdsourcing research. After reading this book, InnoCentive and crowdsourcing research was firmly planted in my mind. At the time I had no idea why I was so fascinated with this topic and why it was so important to remember.
After Ellie’s diagnosis, Rachel and I gradually started to reach out for support and became more involved within the PWS community. We went to our first FPWR conference in the fall of 2009. After that conference we were hooked and committed to trying to make a difference in the community.
As with every parent who has a child with special needs, all I want for Ellie is that she is not held back by her condition. We all know life is often hard enough and having additional walls to climb makes that life even harder. The only way I know of eliminating or reducing these challenges is through research. In Wikionomics there are examples after examples about how crowdsourcing had greatly shortened the time frame from identifying a problem to finding a solution. And man do we have a problem that needs a solution now! Could crowdsourcing help reduce the research time? The more I thought about it, the more I became obsessed. I couldn’t get out of my head. So I did as much research as I could and shared it with as many people as possible. In particular I’d like to say sorry to Theresa and Keegan for all those emails!
After doing the research and coming to the conclusion that it could be applied to PWS, it was time to see if this concept could get off the ground. I decided to give InnoCentive a call. I made that call without really knowing where it would lead or if it would be productive. But after talking with them and listening to how they run these research challenges, it was clear that Innocentive was going to be a great company to work with. We even found out that they had a program called “Public Good”, where they work with nonprofits (free of charge) to implement their first research challenge. After this call I was sold on the idea.
After I talked with Innocentive I quickly contacted Keegan and Theresa! As we talked more about the Research Prize and how it could be applied to PWS, we the decided to come up with a plan and inform the Board. The Board fully supported this idea and our thinking. From that point on, we as an organization have been working with Innocentive to this Research Challenge off the ground.
It’s very exciting to see where this can go. Is this guaranteed to solve hyperphagia? Obviously the answer is no. We as a community know better than most that life is not that predictable and there will be bumps in the road that you have to deal with. The late great Steve Jobs, at a Commencement Speech, said “you can't connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something — your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life.” Are these things I mentioned all connected and will they lead us to our ultimate goal of eliminating the challenges of PWS? All we can do is believe and take action.
I guess the only thing I ask of you (besides trying to solve the Challenge!) is to help generate awareness. Let the world know what we are trying to do - to make our loved ones’ lives just a little bit easier. They deserve it. Just as reading a book and making a simple phone call led to this research challenge; an email, a post on your favorite social network or a conversation with a smart college student could lead us to the person who solves this challenge. You never know where your connections will lead!
"Great discoveries and improvements invariably involve the cooperation of many minds." - Alexander Graham Bell
Shawn Johnson (FPWR Board Member)
Read the press release about the Challenge here.