Opening on CFF Education Committee

Are you passionate about CF education? Do you want to make an impact on the lives of people with CF and their families? If so, apply to be a member of the CF Foundation Education Committee. The CF Foundation Education Committee is a multidisciplinary team consisting of all members of a CF care team, including a parent and adult with CF, for the purpose of reviewing and recommending patient education materials for the cystic fibrosis community. There will be an opening for an adult with CF to serve on the committee as of October 2012 at NACFC. Each member's term is 3 years, which starts and ends at the time of the North American CF Conference (NACFC). The committee meets four times a year – during the NACFC, and then in February, May and August via teleconference. Responsibilities between meetings include: updating content of existing material, drafting and editing new materials, reviewing materials for Education Committee approval, and promoting awareness of materials available. The Committee also looks at areas of educational need for people living with CF and seeks out experts who can help fill in the gaps that have been identified. If you are an adult with CF and are interested in serving on the Committee, click here to apply: Please Note: The application takes approximately 20 minutes to complete. Once you start an application, you must finish it in its entirety, since you will NOT be able to save your answers and revisit your application at a later date. To help you prepare, the application will ask you: Your experience in CF care Specific work you may have done in developing, evaluating, and using educational materials Creative ideas you may have for addressing new material and areas of need Applications are due by FRIDAY, APRIL 20, 2012. If you have any questions, please contact Melissa Chin at This information was provided by Donna Germuga, a Respiratory Therapist at Golisano Children's Hospital.


FDA approves Kalydeco

The first drug that treats the root cause of cystic fibrosis won approval Tuesday (01/31/12), offering a life-changing treatment for a handful of patients with the deadly illness and broader hope for thousands more patients with the inherited disease. The FDA reviewed and approved Kalydeco in approximately three months under the agency’s priority review program that is designed to expedite the review of drugs. The priority review program uses a six-month review, instead of the standard 10 months, for drugs that may offer significant advances in treatment over available therapy. Kalydeco is effective only in patients with CF who have the G551D mutation (about 4% of the CF population). It is not effective in CF patients with two copies of the F508 mutation in the CFTR gene, which is the most common mutation that results in CF. If a patient’s mutation status is not known, an FDA-cleared CF mutation test should be used to determine whether the G551D mutation is present. Read the full FDA press release here. Read an article on the Huffington Post here.  


Highland TV/phone charge gone

Highland Hospital as announced that they have discontinued charges for in-room telephone and television effective January 5, 2012. CFFC has paid these charges for CF patients in the past; however, the hospital's policy change will not only provide consistent coverage but will also free up CFFC funds for other forms of support.