For the 27th year, Cystic Fibrosis Research Inc. will hold a national conference to raise awareness of the disease and advocate for continued research and drug development. “Changing the Faces of Cystic Fibrosis: Inspiring Hope” will take place in San Francisco from August 1st through the 3rd, with several presentations designed for patients, families, caregivers, and researchers.
After the event’s welcoming reception and orientation, CF educator and artist Mary Elizabeth Peters will talk about the quality of life issues for Cystic Fibrosis patients in her presentation “More than Survival: A Pursuit of Happiness.” The same subject will be addressed in “The Ouch Factor: Pain Management in CF,” a lecture by Stephen Jones, PNP, from the Children’s Hospital — Albany Medical Center, in New York. Social worker Isabel Stenzel Byrnes will talk about the resilience of character needed to adapt to the changes caused by the disease.
Thomas G. Keens, MD, at the Children’s Hospital Los Angeles, will present on the latest research developments for CF in a lecture entitled, “Where We Have Been and Where We Are Going,” as will Ahmet Uluer, MD DO at Boston Children’s Hospital, who will present, “The Therapeutic Pipeline: CF Research Updates.”
Cystic fibrosis is often associated with other diseases as well, a subject that will be addressed by Antoinette Moran, MD, at the University of Minnesota Amplatz Children’s Hospital, in a presentation entitled “The Sweet Evolution of CF-Related Diabetes (CFRD).” The detection of CF and CFTR-related metabolic syndrome will be presented by Martin Kharrazi, PhD, at the California Department of Public Health. The relationship between CF and cancer will be also discussed, this time by Katherine Van Loon, MD, at the University of California San Francisco Medical Center.
The organizers of the event noted on their website that, “CFRI’s National Family Cystic Fibrosis Education Conference is held each summer in Redwood City, California. Our conference brings together adults with cystic fibrosis, caregivers, experts and researchers for three days where a variety of cystic fibrosis topics are explored through presentations, panel discussions and support groups. It is an interactive and informative experience for all participants.”
CFRI’s main focus is to fund research, education, and personal support for patients and their families. The organization’s annual conference is one of the CFRI educational events scheduled throughout the year designed to improve community advocacy and awareness, and provide caregivers and patients with “practical advice on maintaining optimal health with cystic fibrosis.” The organization provides financial support to people willing to attend the conference and don’t have available funds.
Find out more about the program here.