Eighth Annual University of Miami Cystic Fibrosis Symposium Draws Leaders

The Miller School of Medicine recently hosted an international gathering of some of the world’s most renowned cystic fibrosis experts. Clinicians and researchers from four continents traveled to Miami for the Eighth Annual University of Miami Cystic Fibrosis Symposium – The Robert “Budge” McKey Symposia, supported by the Batchelor Foundation.

The three-day event was held October 11-13 to share the very latest in CF developments.

“The annual meetings are organized to bring the top leaders in the field of cystic fibrosis together to share their experience with the entire South Florida CF medical community,” said Andrew R. Colin, M.D., professor of pediatrics, Co-Director of the Pediatric Cystic Fibrosis Program, and the Director of the Division of Pediatric Pulmonary Disease. “In the eight years of its existence, the ‘Who’s Who’ among CF scientists from all around the world have been here.”

Six speakers participated in this year’s symposium. They gathered for a “Science Day” October 12 at the Batchelor Children’s Research Institute to cover different topics related to cystic fibrosis.

The speakers included:

Claire Wainwright, M.D., who discussed the role of bronchoscopy in the management of cystic fibrosis lung disease. Professor Wainwright is the lead for cystic fibrosis at the new Lady Cilento Children’s Hospital in Brisbane, which looks after 420 children with CF. She is one of the leading CF researchers in Australia and published extensively in the field.

J. Stuart Elborn, M.D., who discussed the role of infection and the microbiome in the lung. Professor Elborn is one of the leading figures in European CF, both as a clinician and researcher. He serves as Director of the Regional Adult CF Service and Dean of Queens University medical school in Belfast, Northern Ireland, and is President of the European CF Society (ECFS).

George Retsch-Bogart, M.D., who discussed the history of the Therapeutic Development Network, which was created by the Cystic Fibrosis Foundation (CFF) with the goal of streamlining drug development for finding a cure for CF. He is one of the leading figures in CF research in the U.S. in his role as Faculty Director of Network Operations of the CFF’s Therapeutic Development Network’s Coordinating Center.

Ayse Tana Aslan, M.D., who discussed the realities and challenges of CF in Turkey. Professor Aslan is the Director of the Division of Pediatrics Pulmonology at the Research and Development Hospital, Gazi University, Ankara, Turkey. She is also an active member of the National CF Patient Registry and National Neonatal CF Screening Programs — organizations that offer national platforms for early CF diagnosis and long term course and interventions.

Tarig Ali-Dinar, M.D., who discussed sleep and sleep disorders of CF. Ali-Dinar is the Associate Director of the Division of Pediatric Pulmonology at the University of Miami. After completion of a fellowship training program in pediatric pulmonology (one of two in the state of Florida), he completed a year as a Fellow in Sleep Medicine at Boston Children’s Hospital/Harvard Medical School. He also directs the University-based Pediatric Sleep Program and is on the faculty of the fellowship training program in sleep medicine of the University.

Summer Katz, M.A. who discussed the need for emotional support for CF families and the importance of emotional acknowledgment and coping topics. Katz is a CF patient who had a double-lung transplant almost 18 years ago. She works as a Licensed Mental Health Counselor, offers treatment through her private practice in Central Florida, and carries the role of Patient Advocate for the Cystic Fibrosis Pharmacy & Freedom Pharmacy (HHCS Health Group of Companies, LLC).

Colin said the discussions could one day help transform the lives of CF patients.

“There are tremendous giant steps in the science of CF,” he said. “The talks by Drs. Elborn, Wainwright and Retsch-Bogart all dealt with novelties in the field and the complex and intricate organization of the research related to it.”

The “Science Day” was preceded by an effort to bring parents of CF patients up to speed on the newest developments. A series of talks to educate parents about the innovations in the field and progress in research and new therapies was held at Nova Southeastern University, in collaboration with the Cystic Fibrosis Foundation, South Florida chapter.

“One of the main goals beyond informing parents about the advances in the field is to emphasize the families’ key and unique role of participating in research that will lead to new therapies and the expected cure of the disease in the coming years,” Colin said.

Cystic fibrosis is an inherited disease caused by a defective gene that results in the build up of thick, sticky mucus in the lungs and digestive system and other organs of the body. This leads to chronic lung infections and difficulty digesting fats and nutrients.

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