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CysticLife Winter 2014 Research Campaign
Introducing our Exercise Research Committee.

Frank J. Cerny, PhD

Frank has been involved in cystic fibrosis related exercise research since 1979, with over 50 exercise related publications under his belt.

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Julie Desch

Julie, a CF patient and retired physician, now devotes her life to coaching others in the CF community in exercise programs around the United States.

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Manu Kodiyan

Silicon Valley technology entrepreneur motivated by his own undiagnosed condition will help us use cutting edge technology to gather study data.

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Mona Luke-Zeiton, MD

Mona has focused much of her research on the effectiveness of exercise interventions in children with chronic disease, like cystic fibrosis.

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John Mark, MD

John has been working with CF patients for most of his professional career and believes that exercise plays an integral role in the health of his patients.

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Peter Mogayzel, MD

Peter has been working with CF patients at Johns Hopkins since 1998 and is the course director of “Ahead of the Curve: CFTR at 25”.

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David Orenstein, MD, MA

David has been doing cystic fibrosis related exercise research since 1977 and is known as the “exercise guru” by many of his peers.

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Ronnie Sharpe

Ronnie has documented his own journey with cystic fibrosis and exercise since 2009 in a widely read blog called Run, Sickboy, Run.

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Courtney Wheatley, PhD

Courtney has devoted much of her research to the physical response to exercise in the body of a CF patient.

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Next Step in Patient-Driven Research!
12/16/14
 
We are so blown away by the response we received from the community in scoring. There was an incredible response, and the community spoke loud and clear, giving us a clear “winner” to be studied.

The first research question we will study is: Can exercise effectively replace one session of a traditional airway clearance technique?

So what are next steps?
In order to tackle this topic specifically, we have assembled our Exercise Research Committee (ERC) that consists of some major rockstars in the field of exercise and CF.
 
  • Frank J. Cerny, PhD
  • Julie Desch
  • Manu Kodiyan
  • Mona Luke-Zeiton, MD
  • John Mark, MD
  • Peter Mogayzel, MD, PhD, MBA
  • David Orenstein, MD, MA
  • Ronnie Sharpe
  • Courtney Wheatley, PhD

To learn a little bit more about each ERC member, hover over their profile picture. You can also read a more detailed bio on each member of the Exercise Research Committee HERE

How can I get involved?
We want to continue to hear from you. Here's how:
1) Send us an email, use the feedback button CysticLife.org, send a smoke signal. We don’t care how you tell us, but give us your ideas regarding a study surrounding exercise and CF. We haven’t started designing the study, so your ideas can be incorporated into what we study and how we study it.
2) If you’re really fired up and have experience in this area, we would love to have you as a candidate for our Exercise Research Committee. Send your information to research@cysticlife.org

Keep up the great work CL!!
 
Score the Research Questions!
11/06/2014
 
The CysticLife team is excited to announce our next stage of patient-driven research: scoring the research questions.
 
We asked the CL community to submit research ideas, and you responded to the call in a big way. The ideas were then narrowed down from a long list of suggestions into just 5 ideas based on feedback given by the CysticLife Research Advisory Board. The advisory board used a detailed rubric to make sure that we were only moving forward with ideas that were feasible for us to carry out. They also wanted to make sure that you scored research questions that can be effectively studied and will have an impact in the community.
 
So what’s next? We score the questions!
 
You will see the top 5 research questions on the right side of your screen. Click on the ‘score’ button under each research question title; read about the potential research; and then tell us if this is something you’re interested in. Voting 1 on a question means you’re not interested at all while voting 5 means that you’re very interested in the research. Obviously, 2 through 4 are somewhere in between.
 
After the scores are tallied, we will move onto the next phases of patient-driven research: patient-driven study design and patient-driven crowd funding.
 
Get ready to do something that has never been done in the cystic fibrosis community before! 
 
Now go score the research questions!!
 
Final Scores
Thank you for scoring the research questions! Here are the top five in order of popularity.
  • Exercise vs. Traditional Airway Clearance Techniques - (495 points) Discuss...
  • Supplements in CF Care - (410 points) Discuss...
  • Targeted Eating vs. Traditional CF Diet - (364 points) Discuss...
  • Hours of Sleep and Quality of Life - (307 points) Discuss...
  • Mindfulness-based Stress Reduction Course - (243 points) Discuss...
What's next? We want your opinion and guidance as we form the study around exercise and CF. If you're interested in contributing, please send us an email
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