CFF Plans Feb. 28 ‘ResearchCon’ Virtual Event for Cystic Fibrosis Patients
Some 480 people have registered for the Feb. 28 online conference, with at least 300 of them likely to participate, said Shellie Byrum, director of community partnerships at CFF.
The free event, scheduled from 7-10:30 p.m. EST, will focus on the current state of infections associated with CF.
“The cystic fibrosis community is very interested in research in general, so this is a great opportunity for them to hear directly from clinicians and scientists about the latest research on CF infections,” Byrum said in a phone interview from CFF headquarters in Bethesda, Maryland.
The program will begin with a keynote address, “Knowledge is Power: The State of CF Infections and Treatments, and Hope for the Future,” featuring John P. Clancy, MD, the CFF’s senior director of clinical research and a professor of pediatric pulmonary medicine at Cincinnati Children’s Hospital; Ann Field, senior director of drug discovery and development at CFF; and Lisa Saiman, MD, professor of pediatrics at New York’s Columbia University Irving Medical Center.
Ella Balasa, a 27-year-old CF patient living in Richmond, Virginia, and a columnist for CF News Today, will moderate the panel.
That keynote will be followed by information sessions, including “All Bugs are Not Created Equal: An Introduction to the Facts and Fictions of CF Infections,” with John LiPuma, MD, and D.B. Sanders, MD; “Aspergillus Aspirations: Conquering Fungal Infections and Allergy in CF Lungs,” with Mara Cray, Gina Hong, MD, and Richard Moss, MD; and “Inflammation in CF: Friend or Foe?” with Laura Mentch, Deepika Pilineni, MD, and Jennifer Taylor-Cousar, MD.
The event will close with a roundtable discussion featuring five adults who have CF and work in science and research jobs, as well as a small-group discussion about the impact of infection control on daily life.
Last October, during the 32nd Annual North American Cystic Fibrosis Conference in Denver, Colorado, the CFF announced it would spend $100 million between now and 2023 to fund an Infection Research Initiative — more than doubling the organization’s previous investment in this area over the past five years.
In 2017 alone, the CFF funded more than 200 research awards, in areas ranging from infections to inflammation, and last year undertook a record 68 clinical trials. The foundation also has committed $72 million to its multi-year Nonsense and Rare Mutations Research and Therapeutics Initiative.
An estimated 30,000 Americans have CF. Yet, it’s particularly hard for CF patients to meet in the flesh to share information. For one thing, because of the high risks of cross-infection, the foundation has a very strict attendance policy that prohibits more than one person with the disease from attending any CFF-sponsored indoor event at the same time.
“Also, because it’s a rare disease, it’s not like you also have someone with CF who lives down the street from you,” Byrum said. “There are lots of barriers preventing people with CF from getting together.”
ResearchCon is the first of four CFF-sponsored virtual events this year. Others on the calendar include CF FamilyCon 2019, set for June 9; BreatheCon 2019, scheduled for Sept. 20; and 2019 CF MiniCon: Transplant, to take place Nov. 14.