Great Strides 2007
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International CF Conference Draws Thousands

Conference attendees stopped at exhibitor booths to learn more about different potential therapies, products and exciting new CF research.

Thousands of CF physicians, researchers, scientists and other medical professionals from around the globe gathered at the 21st Annual North American CF Conference (NACFC) recently in Anaheim, Calif. A yearly ritual, begun in 1986, the conference provides an important opportunity for professional members of all disciplines throughout the CF community to come together to learn from each other and build collaborations.

Each year, three internationally renowned CF caregivers/researchers review the latest developments in their field in special plenary addresses. (Plenary addresses can be viewed at CFF's web site.)

In her address, “From Basic Science to the Clinic,” Margarida Amaral, Ph.D., from Lisbon, Portugal, described the state-of-the-art technologies used in her lab to study ∆F508 CFTR, the most common mutation of the defective protein responsible for CF. Amaral showed correctors produced by Vertex Pharmaceuticals in collaboration with the CF Foundation, improve the production of mature CFTR channel proteins in in vitro cellular systems. Vertex recently selected a corrector compound for development, the first to emerge from the Foundation’s collaboration with Vertex for corrector research.

In the second plenary address, “CF Drug Development: What’s New?” Felix Ratjen, M.D., Ph.D., from Toronto, Ontario, described a number of drug trials. Protection or improvement of lung function was seen in several trials, including denufosol from Inspire Pharmaceuticals and aztreonam lysine for inhalation from Gilead Sciences. Ratjen, however, noted that new trials hinge on the recruitment of many more volunteers. Conference participants were encouraged to talk to patients and families about trial participation, and Ratjen stressed that new drugs will only come to the marketplace with the help of the most crucial element, the trial volunteer.

Michael Boyle, M.D., of Baltimore, Md., described some results from the Foundation’s Quality Improvement Initiative in his plenary address, “Improving Patient Outcomes Using the Tools We Have Now.” Boyle showed the remarkable improvements that two CF care centers made by adopting the treatment policies and philosophies of centers with the best nutritional or pulmonary ratings. The depth and quality of these improvements demonstrated that using tools already available can lead to a real difference in patients’ lives.

Of course, the plenary sessions represented only a tiny fraction of the conference. Caregivers compared notes in roundtable discussions, and bench scientists got into the nitty-gritty details of experimental results presented on hundreds of posters. Workshops, brown bag lunch sessions and symposia were organized around major issues that appealed to the diverse group of participants.

The 2007 NACFC was also host to a first-of-its-kind meeting of Family Advisory Groups. Because the Foundation recognizes the value of family involvement in improving outcomes, CF caregivers and families were brought together to brainstorm ways to encourage centers and hospitals to create family advisory groups. Centers with successful groups shared ideas and links to resources with centers that are struggling to get the advisory groups started. Parents spoke about how empowered they felt belonging to the team and making decisions that can improve the delivery of care and the health of their children.

As always, participants left the conference poised to take new ideas back to their care centers and laboratories across the globe and continue their work to enhance and extend the lives of all those with CF.