In March 2009, Ronnie Sharpe, a CF patient, started to blog (www.RunSickboyRun.com
about his life with CF. The goal of his blog? To hold himself accountable in his exercise routine, meet a
handful of other patients, and hopefully inspire a few people along the way. But his online journal
accomplished something else. As his blog grew in popularity, and he spoke with more CF community members,
Ronnie quickly learned of the need in the community for a positive place where they could ask questions,
post their thoughts, communicate with one another, and feel uplifted. This discovery got Ronnie's
entrepreneurial juices flowing, and he decided to bring the community what it needed.
Launched in January 2010, CysticLife.org has become the social network for the CF community. This positive,
uplifting site is the central location for people with CF, their family, and their friends to share tips,
questions, ideas, experiences and encouragement. Members can maintain a profile, post blogs, ask and answer
questions, create polls, directly contact one another, and search others within the community by location,
relation to CF, age and gender.
"CysticLife.org is a place where anyone affected by CF can come to be inspired, motivated and educated. The
CysticLife community has become an online family; loving and supporting each other from all across the
globe." - Ronnie Sharpe, Founder.
CysticLife.org is funded by paid marketing projects, a generous angel investor, and out of the pockets of
family, friends and founders. It truly is a labor of love.
We are passionate about things that are good for CF patients and families. One of these things is research. Research is a powerful way to use our present to impact our future. In the past, CysticLife has supported research by helping to promote and recruit for research studies and clinical trials. But that no longer felt like enough, so we are doing more.
The first step was creating our inaugural research advisory board. This multi-stakeholder group includes patients and parents from our CL community who will work alongside CF researchers, clinicians, and nurses.
We are so excited at the support we received for our vision and the willingness of the research community to make this partnership a reality. We have attracted some of the most dedicated professionals in the field of cystic fibrosis to this board.
Dee Acquazzino is the CF Pediatric Clinical Coordinator at the Nebraska Regional CF Center in Omaha, Nebraska. She has been the clinical coordinator for 36 years including a previous 25 year co-career as the research coordinator at her center. She has worked with both adult and pediatric CF patients and assisted in the development of their center's adult CF program 12 years ago. While the research coordinator, she managed many clinical trials and worked with a variety of sponsors, as well as the CFTDN. She was the lead research coordinator at her center for the pivotal trials for Pulmozyme , TOBI and Xolair and also co-coordinated a multi-center gene therapy trial at her site. She has participated in many industry advisory boards providing feedback on various initiatives and educational materials. Dee has also served as a committee member on the CFF Patient Registry and currently is a national facilitator for the CFF Clinical Coordinator Mentoring Program. She has been involved in 2 CFF QI programs (LLC initiatives) and remains involved in QI initiatives within her team as well as facilitator for their CF Family Advisory Board
Lynne Campbell is an Independent Consultant to the medical device and pharmaceutical industry. She provides domestic and international clinical research monitoring services to pharma, biotech and contract research organizations. Lynne has an extensive professional background in many therapeutic areas, with a special emphasis on Oncology and Cardiology that spans all phases of clinical research. She lives near Boston, MA and will bring additional insight as the mom of an adventurous and athletic adult son with CF
Cori Daines, MD
Dr. Cori Daines earned her MD at St. Louis University School of Medicine, completed her residency at Cardinal Glennon Children's Hospital, and her fellowship in pediatric pulmonary medicine at the University of North Carolina. She worked at Cincinnati Children's Hospital Medical Center before joining The University of Arizona in 2007. Dr. Daines is an Associate Professor of Pediatrics, director of the pediatric flexible bronchoscopy program and pediatric respiratory care for the University of Arizona Medical Center, and co-CF center director at the University of Arizona. She cares for children with chronic pulmonary disorders, including asthma, cystic fibrosis, apnea and sleep disorders, airway disorders, and eosinophilic diseases. She is an expert in pediatric flexible bronchoscopy. Dr. Daines also cares for children with eosinophilic gastroenteritis and eosinophilic esophagitis at the PANDA Children's Aerodigestive Disorders Center, located within the UAHN Children's Multi-Specialty Center. In addition to caring for children with pulmonary disorders, Dr. Daines conducts research through the Steele Children's Research Center. Her research interests include the pulmonary manifestations of gastrointestinal diseases, such as eosinophilic esophagitis and gastroesophageal reflux, and the impact of pulmonary aspiration on chronic lung disease. She also directs the University of Arizona's Therapeutic Development Center for the Cystic Fibrosis Foundation and has funded quality improvement research projects in cystic fibrosis from the Cystic Fibrosis Foundation. Dr. Daines is board certified by the American Board of Pediatrics and the American Board of Pediatric Pulmonology
Peter Mogayzel, MD, PhD, MBA
Dr. Peter Mogayzel is the Director of the Cystic Fibrosis Center and Medical Director of the Pediatric Specialty Clinic at the Johns Hopkins Hospital. A Professor of Pediatrics at the Johns Hopkins School of Medicine, he attended Brown University and received his M.D. and Ph.D. degrees from Boston University. He received a M.B.A. at Johns Hopkins University in 2010. He completed his pediatric residency at the University of Washington, and pediatric pulmonary and pediatric critical care fellowships at Johns Hopkins in 1998 before joining the faculty. Dr. Mogayzel is a Fellow of American College of Chest Physicians and the American Academy of Pediatrics, and a member of several societies including the American Thoracic Society. His research interests include the regulatory properties of the CFTR gene, mucociliary clearance and development of new therapeutics for cystic fibrosis. Dr. Mogayzel has published many journal articles and several book chapters on a variety of topics related to cystic fibrosis and he is an ad hoc reviewer for several journals, including the Journal of Cystic Fibrosis and American Journal of Respiratory and Critical Care Medicine. Dr. Mogayzel serves as Chairman of the Clinical Practice Guidelines for Pulmonary Therapies Committee and the Therapeutic Development Network Protocol Review Committee both of the Cystic Fibrosis Foundation. He is also a past Chairman of the Cystic Fibrosis Foundation Center Committee which accredits cystic fibrosis centers in the United States.
Paul Quinton, PhD
Dr. Paul Quinton holds the Nancy Olmsted Chair in Pediatric Pulmonary Medicine in the School of Medicine at UC San Diego and is professor of Biomedical Sciences at the School of Medicine at UC Riverside. Dr. Quinton is recognized for his work in discovering and defining the basic defect in cystic fibrosis (CF) that prevents chloride ions (part of salt) from crossing cells, which explained why CF sweat is salty and more recently for demonstrating that the lack of bicarbonate in CF results in thicker mucus. He diagnosed himself with cystic fibrosis at age 20 while reading about lung diseases in college and has been working in CF research for more than forty years
Jenn Whinnem is currently the digital media manager for the Connecticut Health Foundation. In this role, she manages the foundation's digital media platforms and leads the overall digital strategy for the foundation. She is a graduate of CT Health's Leadership Fellows Program. Prior to joining CT Health, Whinnem was the Communications Manager for CRIX (Clinical Research Information eXchange) International, a start-up not-for-profit company tasked with overseeing the delivery of an information exchange for the clinical research industry. She began her communications career as a contracted resource in the Informatics division of Pfizer Global Research and Development. Whinnem holds a Bachelor of Arts degree in English from Eastern Connecticut State University. In addition to her professional contributions to the team, Whinnem will bring additional insights as a CF patient.
Jeffrey Wine, PhD
Dr. Jeffrey Wine is a Benjamin Scott Crocker Professor of Human Biology and the director of the Cystic Fibrosis Research Laboratory at Stanford University in Palo Alto, CA. Dr. Wine received his doctorate from UCLA in physiological psychology in 1971 and did his postdoctoral work at Stanford University in biology, before joining the faculty in 1972. In 1986 he was named a professor in the Department of Psychology at Stanford University, a position he still holds today. Dr. Wine also sits on the Cystic Fibrosis Foundation Research & Research Training Review Panel. As director of the Cystic Fibrosis Research Laboratory at Stanford University Dr. Wine is devoted to understanding the pathophysiology of cystic fibrosis with the goal of ameliorating cystic fibrosis disease. His laboratory developed methods for monitoring fluid secretion from individual submucosal glands, and was the first to demonstrate that airway glands, which produce antibiotic-rich mucus that helps protect the airways, display a profound secretory defect in cystic fibrosis patients. His current research is two-fold: to further understand the role of submucosal glands in protecting the airways from infections; and how the loss of CFTR affects those functions. Also, to develop and refine biomarkers dedicated to increasing the speed with which CFTR-directed therapeutics can reach patients.
Frank J. Cerny, PhD
Frank Cerny, PhD is a Professor Emeritus in the Departments of Pediatrics and Exercise and Nutrition Sciences at State University of New York at Buffalo. He has his B.A. in Biology and Chemistry from Macalester College, a Ph.D in Physical Education/Physiology from University of Wisconsin, and a Post-doctorate at Medizinisches Universitats Klinik in Freiberg, West Germany.
Julie Desch, MD (retired)
Julie Desch is a 54-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).
Manu is the founder of Althea Health and he is collaborating with CysticLife implement cutting edge technology to gather study data from devices and smartphones. He has over 20 years of experience in the software industry. Manu is a strong advocate of customer focused lean and agile development. Over the last 10 years Manu has worked in various leadership roles mostly in technology startup companies, leading them from conceptual stage to commercial production applications. Prior to founding Althea Health Manu was the acting CIO of Golden gate University. Previous positions include VP of Engineering at ijex.com, Director of Engineering at Cake Financial. A bout with a longterm undiagnosed personal health condition made Manu focus his attention on the inefficiencies in the healthcare system. Manu believes that a confluence of new technologies like smartphones and personal health devices and new legislations is going to change patient participation in healthcare. Manu holds a Master's degree in Management from the Indian Institute of Management, Bangalore and a Bachelor's degree in Technology from the Indian Institute of Technology, Madras.
Mona Luke-Zeiton, MD
Mona Luke-Zeitoun is a pediatric pulmonologist / exercise medicine physician at the Palo Alto Medical Foundation. Her expertise is in the evaluation and management of exercise problems in young athletes and children with various medical conditions. Shortness of breath with exercise is very common among young athletes, and early recognition of airway diseases specific to athletes is essential in preventing unnecessary distress, decreased performance, and long-term damage to the airways. Her goal is to help young athletes and chronically ill children exercise safely, optimize their performance and improve the prognosis of their underlying conditions. Her research focuses on the mechanisms of exercise-induced asthma in athletes and the effectiveness of exercise interventions in children with chronic disease, such as cystic fibrosis. Her work has been supported by grants from various foundations, including the National Institutes of Health, the American College of Sports Medicine, the Canadian Academy of Sport and Exercise Medicine, the CHEST Foundation, and the Cystic Fibrosis Foundation. Additionally, she has been a member of several national committees, such as the American College of Sports Medicine Strategic Health Initiative, the Cystic Fibrosis Foundation Exercise Research Workgroup, and the NIH Consortium Child Health Oversight Committee Pediatric Exercise Evaluation Workgroup.
John Mark, MD
Dr. John Mark is a Clinical Professor in Pediatrics, Pulmonary Medicine Division at Stanford Children's Health, Stanford University, Palo Alto, CA. He is the Director of the Pediatric Pulmonary Fellowship Program, Associate Program Director of the Pediatric Residency Program and the Medical Director for Stanford Children's Complex Care Program. Additionally, he is a Clinical Adjunct Assistant Professor of Pediatrics, Pediatric Pulmonary Medicine at the University of Arizona and a Clinical Professor of Pediatrics, Pediatric Pulmonary Medicine at the Packard Children's Hospital at Stanford, Stanford University. Dr. Mark is incredibly passionate about exercise both professionally and personally including running over 150 ultramarathons.
Peter Mogayzel, MD, PhD, MBA
Dr. Peter Mogayzel is the Director of the Cystic Fibrosis Center and Medical Director of the Pediatric Specialty Clinic at the Johns Hopkins Hospital. A Professor of Pediatrics at the Johns Hopkins School of Medicine, he attended Brown University and received his M.D. and Ph.D. degrees from Boston University. He received a M.B.A. at Johns Hopkins University in 2010. He completed his pediatric residency at the University of Washington, and pediatric pulmonary and pediatric critical care fellowships at Johns Hopkins in 1998 before joining the faculty. Dr. Mogayzel is a Fellow of American College of Chest Physicians and the American Academy of Pediatrics, and a member of several societies including the American Thoracic Society. His research interests include the regulatory properties of the CFTR gene, mucociliary clearance and development of new therapeutics for cystic fibrosis. Dr. Mogayzel has published many journal articles and several book chapters on a variety of topics related to cystic fibrosis and he is an ad hoc reviewer for several journals, including the Journal of Cystic Fibrosis and American Journal of Respiratory and Critical Care Medicine. Dr. Mogayzel serves as Chairman of the Clinical Practice Guidelines for Pulmonary Therapies Committee and the Therapeutic Development Network Protocol Review Committee both of the Cystic Fibrosis Foundation. He is also a past Chairman of the Cystic Fibrosis Foundation Center Committee, which accredits cystic fibrosis centers in the United States.
David Orenstein, MD, MA
Dr. David Orenstein is the Director of the Antonio J. and Janet Palumbo Cystic Fibrosis Center. He is an Antonio J. and Janet Palumbo Professor of Cystic Fibrosis at the Children's Hospital of Pittsburgh of UPMC; a Professor of Pediatrics at the University of Pittsburgh School of Medicine; a Professor of Health and Physical Education Activity (Exercise Physiology) at the University of Pittsburgh School of Education; an Affiliate Faculty Member at the University of Pittsburgh Center for Bioethics and Health Law; and a Principal Investigator (Pediatrics) at the Therapeutics Development Center (Cystic Fibrosis Foundation). He went to Case Western Reserve University for medical school in Cleveland, OH and did his residency and fellowship at the Rainbow Babies and Children's hospital. He is board certified by the American Board of Pediatrics and Pediatric Pulmonology.
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 7500 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.
Courtney Wheatley, PhD
Courtney Wheatley, PhD is a Post Doctoral Fellow at the Cardiovascular Research Lab of Bruce Johnson at the Mayo Clinic in Rochester, MN. 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 the 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.