Organizations Filed Purposes:
THE MISSION OF THE CYSTIC FIBROSIS FOUNDATION IS TO CURE CYSTIC FIBROSIS AND TO PROVIDE ALL PEOPLE WITH THE DISEASE THE OPPORTUNITY TO LEAD FULL, PRODUCTIVE LIVES BY FUNDING RESEARCH AND DRUG DEVELOPMENT, PROMOTING INDIVIDUALIZED TREATMENT, AND ENSURING ACCESS TO HIGH QUALITY, SPECIALIZED CARE. A LIFE-SHORTENING GENETIC DISEASE, CF AFFECTS THE LUNGS AND DIGESTIVE SYSTEMS OF MORE THAN 30,000 PEOPLE IN THE U.S. CURRENTLY, THERE IS NO CURE.
THE MISSION IS TO CURE CYSTIC FIBROSIS AND TO PROVIDE ALL PEOPLE WITH THE DISEASE THE OPPORTUNITY TO LEAD FULL, PRODUCTIVE LIVES.
MEDICAL PROGRAMS: THE CYSTIC FIBROSIS FOUNDATION HAS 70 OFFICES IN 39 STATES THAT HELP TO COMMUNICATE AND DISTRIBUTE INFORMATION ABOUT SCIENTIFIC STUDIES AND INVESTIGATIONS, CYSTIC FIBROSIS CENTERS AND OTHER MEDICAL PROGRAMS.
PUBLIC INFORMATION AND EDUCATION: TO BROADEN ITS REACH AND TO SUPPORT ITS MISSION, THE CYSTIC FIBROSIS FOUNDATION HAS PROGRAMS DESIGNED TO INFORM CYSTIC FIBROSIS PATIENTS, THEIR FAMILIES AND THE GENERAL PUBLIC REGARDING THE DISEASE. IN 2015, CHAPTER OFFICES DISTRIBUTED EDUCATIONAL MATERIALS TO THE CF COMMUNITY, INCLUDING AUDIO AND VISUAL AIDS, EXHIBITS AND CORRESPONDENCE. THE CHAPTER OFFICE ALSO MADE AVAILABLE UP TO 10 PUBLICATIONS AND 50 VIDEOS THAT WERE DEVELOPED SPECIFICALLY FOR THE CF COMMUNITY BY THE CYSTIC FIBROSIS FOUNDATION.
COMMUNITY SERVICE PROGRAMS: THE CYSTIC FIBROSIS FOUNDATION PROVIDES YEAR-ROUND EFFORTS TO EDUCATE, INFORM, AND EMPOWER PATIENTS AND THEIR FAMILIES ABOUT THE LATEST DEVELOPMENTS IN TREATMENT AND CARE. THE PROGRAMS ARE DESIGNED TO HELP THE GENERAL PUBLIC IN THE DETECTION OF THE DISEASE BY PROVIDING A REFERRAL SERVICE AND HANDLING INQUIRIES CONCERNING THOSE WITH CYSTIC FIBROSIS. APPROXIMATELY 28,900 PATIENTS WERE SERVED IN 2015 INCLUDING APPROXIMATELY 850 PATIENTS WHO WERE NEWLY DIAGNOSED.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Barbara Balik | DIRECTOR OF SPECIAL GIVING | 50 | $128,445 |
| Vera H Twigg | EXECUTIVE VP, CFO & SECRETARY | 5 | $0 |
| C Richard Mattingly | EXECUTIVE VP & COO | 5 | $0 |
| Robert Beall Phd | PRESIDENT & CEO (UNTIL 9/30) | 4 | $0 |
| Preston Campbell Md | PRESIDENT & CEO (AS OF 10/1) | 4 | $0 |
| Kc Bryan White | TRUSTEE | 3 | $0 |
| Paul W Whetsell | EXECUTIVE VICE CHAIRMAN | 3 | $0 |
| Amy S Weinberg | TRUSTEE | 3 | $0 |
| Theodore J Torphy Phd | TRUSTEE | 3 | $0 |
| Charles J Thayer | TRUSTEE | 3 | $0 |
| Steven Shak Md | TRUSTEE | 3 | $0 |
| Gray B Sabin | VICE CHAIRMAN | 3 | $0 |
| Eric Olson Phd | TRUSTEE | 3 | $0 |
| Robert H Niehaus | TRUSTEE | 3 | $0 |
| David A Mount | TREASURER | 3 | $0 |
| Chad T Moore | TRUSTEE | 3 | $0 |
| Catherine C Mcloud | CHAIR | 6 | $0 |
| Susan L Hook | TRUSTEE | 3 | $0 |
| Carole B Griego Md | TRUSTEE | 3 | $0 |
| Richard J Gray Esq | VICE CHAIRMAN | 3 | $0 |
| Louis Defalco | TRUSTEE | 3 | $0 |
| Richard L Dandurand | VICE CHAIRMAN | 3 | $0 |
| Michael L Beatty Esq | TRUSTEE | 3 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/201632189349300133_public.xml