|Peter J. Mogayzel, Jr., M.D., Ph.D.|
Director, Cystic Fibrosis Center
Cystic fibrosis can be a socially isolating disease. Because of the risks of patient-to-patient transmission of respiratory infection, CF patients must keep their distance from each other. Yet the complexity of the disease and the immense challenges it imposes on patients and their families call for connections among those patients, their families and caregivers. There is no cure for CF, only new and better ways to manage it. There is no one CF experience, but thousands of experiences influenced by factors like the severity of the disease, the age and gender of the patient, family circumstances, and access to care. There is a great desire for the exchange of these experiences, the sharing of successes, as well as news about drug advances and the latest therapies. There is great value, as well.
This is what Drs. Sheldon and Arlene Bearman and The Herbert Bearman Foundation envisioned in supporting this website—a sophisticated, interactive on-line community for patients and families living with CF. We’ve tried to deliver just that in covering all aspects of CF, from pioneering research findings about the structure and function of the CFTR protein to novel therapies to clear airways and control infections to new ways to manage CF at home. We’ll not only tell you what we know about CF, we’ll show you through illustrations, animations and videos. A picture tells what a thousand words cannot, especially when it comes to CF tests like mutation analysis and nasal potential difference.
The research section of our site will keep you up to date on the latest studies and bench-to-bedside therapies at Hopkins. Want to enroll in a study? We’ll tell you how. From our newsroom you’ll learn about groundbreaking drug therapies and new diagnostic tools, as well as about events and happenings at the Johns Hopkins Cystic Fibrosis Center. Also, we’ll link you to current and back issues of our CF research newsletter, Partners in Discovery, and offer you the opportunity to subscribe online. We’ll connect you to other resources, as well. On our People pages we’ll tell you about our CF faculty and staff, from physicians and nurses to nutritionists and therapists, who work with you each day to fight CF and improve your quality of life.
Indeed, this is a comprehensive, "Everything you wanted to know about CF" website. But more than anything else, it’s about our community of CF patients and their families. That’s why this website is not one but two sites—one for the general public and a secure, password-protected site for Johns Hopkins CF patients and their families. We also address three distinct audiences—adults, teens and kids. Why? As you know, the concerns and needs of the three groups vary with their age, gender and daily lives. Nutrition needs change through life. The adult with cystic fibrosis may be concerned about managing her CF at work; the teen with managing CF at school. A mother may worry about meeting her CF child’s nutritional needs—as well as how her non-CF child is coping with all the attention showered on his CF sibling. You know the experiences, you’ve lived them.
So share them, tell us your story. Join a chat. Toss some questions at our experts. Connect. Tell us how we can improve this website. After all, it’s yours!