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CF Foundation Expands Legislative Agenda

Representative Edward J. Markey (holding bowl), who received the “Breath of Life Award” for strengthening research and increasing awareness of CF on Capitol Hill, is joined (from l to r) by Robert J. Beall, Ph.D., CF Foundation president and CEO; Bob Coughlin, the Massachusetts/Rhode Island Chapter’s Volunteer Leadership Initiative chair; and Joe O’Donnell, Milestones to a Cure campaign chair.

With a new Congressional Cystic Fibrosis Caucus in place, the Cystic Fibrosis Foundation is expanding its legislative agenda to increase CF research opportunities at the National Institutes of Health and to improve access to care for people with CF.

Launched last fall, the new caucus is co-chaired by Representatives Ed Markey (D-MA) and Cliff Stearns (R-FL), and now has 98 members. It will serve as a valuable tool for the Foundation to educate members of Congress about the disease and spur action on issues beneficial to the CF community.

The new Congress will address several healthcare issues. These include patients’ ability to access healthcare — with particular attention given to children’s health insurance programs.  Congress also will focus on Food and Drug Administration (FDA) issues, including drug safety review, FDA funding, and manufacturers’ prescription drug user fees.

Last fall, the Foundation endorsed the National Institutes of Health Reform Act. This new law will fund biomedical research projects that involve high-impact, cutting-edge research conducted at multiple institutes, which will help to address critical research needs for complex diseases like CF.

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