The Power of a “Patient-Driven” Approach to CF Research

  • “Patient-centered care” is the concept of actively involving patients and families in their healthcare, including designing new healthcare models and making shared decisions about management and treatment. Come learn how CysticLife has taken this one step further, becoming pioneers in “patient driven” research. We will tell the story about how the cystic fibrosis (CF) community channeled their collective power to decide what type of life-changing research they wanted to see happen. Learn how they designed, planned, and funded their own innovative study to learn about exercise as a treatment in CF, including study design, medical implications, and research goals. Finally, watch a real-time demonstration of CysticLife’s approach to crowdfunding. Our hope is that this new approach to patient-driven research will empower other patient communities to pursue their own life-changing and meaningful research.

  

  Courtney Wheatley, PhD is a Post Doctoral Fellow at the Cardiovascular Research Lab of Bruce Johnson at the Mayo Clinic in Scottsdale, AZ. Courtney did her dissertation on the Endogenous and Exogenous Regulation of Exhaled Ions in Patients with Cystic Fibrosis, and is continuing that research interest in showing that exercise is medicine for individuals with cystic fibrosis, and understanding the regulation of the transport mechanisms for ion and water flux in the alveolar epithelium by exogenous and endogenous compounds with application to mediating the improper ion and water movement that is the fundamental pathophysiology of cystic fibrosis, congestive heart failure, and other pulmonary disorders. Courtney got her B.S. in both Chemistry and Biology from Iowa Wesleyan College and her Ph.D from the University of Arizona.

  

  Julie Desch is a 55-year-old "CF survivor." She attended Stanford Medical School from 1984 to 1989, where she had the opportunity to work in the Cystic Fibrosis Research Laboratory under the direction of Dr. Jeffrey Wine. She continued on at Stanford, completing a residency and two fellowships in Anatomic Pathology. After training, she worked for five years at Kaiser Hospital in San Francisco, California as a surgical and skin pathologist. After retiring to take better care of herself and to be a mom, she became a certified personal trainer and wellness coach. Now she enjoys coaching children and adults with cystic fibrosis through her non-profit organization, New Day Wellness, to live as healthfully as possible. She is passionate about spreading the word about the benefits of fitness, healthy lifestyle, nutrition, and stress management to the CF community through her blog, www.sickandhappy.com. She writes the Wellness Column for the CF Roundtable, a publication for and by adults with cystic fibrosis, and is a member of the Research Advisory Board for Cystic Fibrosis Research Incorporated (CFRI).

founder of CysticLife

  Ronnie Sharpe is the founder of CysticLife, an organization centered around positive transformation. Sharpe is the visionary behind CysticLife.org, the leading social network for the Cystic Fibrosis community, with over 8000 members. The site provides a central location for the CF community to share tips, questions, ideas, experiences and, most of all, encouragement. Sharpe is a true believer in the power of social media and speaks nationally at health-related conferences about the impact of social media in healthcare. Sharpe is an avid exerciser and blogs regularly about his daily trials and triumphs on his site RunSickboyRun.com. He hopes his blog shows other individuals with CF and their families that through a commitment to treatments and exercise we can be the best version of ourselves. Sharpe shares his story and message through speaking engagements across the country. Sharpe is a graduate of the University of Arizona with a degree in psychology. He was diagnosed with cystic fibrosis as an infant in 1980.

  • Thu, December 10, 2015
  • 2:00pm PST
  • Duration: 1 hour and 7 minutes
  • C.E.U. --
  • P.A.C.E. --

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