| FORM 990, PART III, LINE 1: |
THE MISSION OF THE CYSTIC FIBROSIS FOUNDATION IS TO CURE CYSTIC FIBROSIS (CF) AND TO PROVIDE ALL PEOPLE WITH CF THE OPPORTUNITY TO LEAD LONG, FULFILLING LIVES BY FUNDING RESEARCH AND DRUG DEVELOPMENT, PARTNERING WITH THE CF COMMUNITY, AND ADVANCING HIGH QUALITY, SPECIALIZED CARE. |
| FORM 990, PART III, LINE 4A: |
MEDICAL PROGRAMS - SINCE 1955, THE CYSTIC FIBROSIS FOUNDATION HAS BEEN DEDICATED TO CURING AND CONTROLLING CYSTIC FIBROSIS (CF). THE CYSTIC FIBROSIS FOUNDATION IS THE WORLD'S LEADER IN THE SEARCH FOR A CURE FOR CYSTIC FIBROSIS, A LIFE-THREATENING GENETIC DISEASE THAT AFFECTS MORE THAN 32,100 PEOPLE IN THE UNITED STATES, AND 70,000 WORLDWIDE. THE CF FOUNDATION HAS AND CONTINUES TO FUND HUNDREDS OF MILLIONS OF DOLLARS IN RESEARCH COSTS TO HELP DISCOVER/DEVELOP EFFECTIVE CF DRUGS AND THERAPIES. IN 2021, THE CF FOUNDATION INVESTED $266 MILLION INTO RESEARCH AND CARE. DUE IN PART TO THE FOUNDATION'S EFFORTS, THE LIFE EXPECTANCY OF PEOPLE WITH CF HAS MORE THAN DOUBLED IN THE LAST 30 YEARS, AND RESEARCH TO FIND A CURE IS MORE PROMISING THAN EVER BEFORE. THE CF FOUNDATION HAS ATTRACTED INDUSTRY TO JOIN ITS MISSION BY FUNDING DRUG DISCOVERY AND DEVELOPMENT RESEARCH CONDUCTED BY BIOTECHNOLOGY COMPANIES. IT ALSO PROVIDES MATCHING AWARDS TO CF DRUG DEVELOPERS FOR CF RESEARCH AND FUNDS A SPECIALIZED CF CLINICAL TRIALS NETWORK OF NEARLY 90 FOUNDATION-ACCREDITED CARE CENTERS. AS A RESULT OF THIS FUNDING, IN 2021 THE CF DRUG DEVELOPMENT PIPELINE HAD 42 THERAPIES IN DEVELOPMENT IN ADDITION TO 16 FDA APPROVED TREATMENTS THAT ADDRESS COMPLICATIONS LIKE INFECTIONS AND A POTENTIAL CURE. THE TREATMENT AND CARE PROTOCOLS DEVELOPED BY THE CF FOUNDATION ARE HELPING TENS OF THOUSANDS OF PEOPLE WITH THE DISEASE LIVE LONGER, HEALTHIER LIVES. TO SUPPORT ITS MISSION, THE FOUNDATION ALSO FUNDS AND ACCREDITS A NATIONWIDE NETWORK OF MORE THAN 130 CARE CENTERS. THIS NETWORK PROVIDES THE BEST CARE FOR PEOPLE WITH CF AND HAS BEEN RECOGNIZED BY THE NATIONAL INSTITUTES OF HEALTH AS A MODEL OF CARE FOR A CHRONIC DISEASE. IN 2021, THE FOUNDATION PROVIDED MORE THAN $47 MILLION OF SUPPORT FOR CARE CENTERS AND CLINICIANS. THE FOUNDATION ALSO MANAGES A PATIENT REGISTRY OF PEOPLE WITH CF, COLLECTING INFORMATION ON THE HEALTH STATUS OF MORE THAN 31,411 PEOPLE WITH CF AND PROVIDING CAREGIVERS AND RESEARCHERS CRITICAL INFORMATION. THIS INVALUABLE TOOL HELPS IDENTIFY NEW HEALTH TRENDS AND EFFECTIVE TREATMENTS AND IMPROVE THE QUALITY OF CF CARE. THE PATIENT REGISTRY IS AN INTERNATIONALLY RECOGNIZED MODEL FOR OTHER NONPROFIT HEALTH ORGANIZATIONS, INCLUDING OTHER CF ADVOCACY GROUPS. |
| FORM 990, PART III, LINE 4B: |
COMMUNITY SERVICES - THE FOUNDATION PROVIDES MUCH-NEEDED SUPPORT FOR PATIENTS AND THEIR FAMILIES AS THEY MANAGE THE PHYSICAL, EMOTIONAL, AND FINANCIAL CHALLENGES OF LIVING WITH CF FROM SUPPORTING SPECIALIZED QUALITY CF CARE, TO PROVIDING INFORMATION AND RESOURCES TO HELP PEOPLE WITH CF BECOME EFFECTIVE PARTNERS IN THEIR CARE, TO DEVELOPING PROGRAMS TO HELP CONNECT PEOPLE WITH CF AND THEIR LOVED ONES WITH OTHERS IN THE CF COMMUNITY SO THEY FEEL LESS ALONE. APPROXIMATELY 32,100 PEOPLE WITH CF WERE SERVED IN 2021, INCLUDING APPROXIMATELY 779 INDIVIDUALS WHO WERE NEWLY DIAGNOSED. LACK OF ADEQUATE INSURANCE COVERAGE FOR CF THERAPIES HAS BEEN A CONSISTENT CONCERN FOR THOSE LIVING WITH THE DISEASE AND THEIR FAMILIES. COMPASS IS A HIGHLY PERSONALIZED SERVICE TAILORED TO AN INDIVIDUAL'S CIRCUMSTANCES RELATED TO COMPLEX INSURANCE, FINANCIAL, LEGAL, AND OTHER ISSUES THAT CAN PREVENT ACCESS TO MUCH-NEEDED CF THERAPIES AND CARE. IN 2021, SKILLED COMPASS CASE MANAGERS FIELDED MORE THAN 10,000 REQUESTS FROM PEOPLE WITH CF, THEIR FAMILIES, AND THEIR PROVIDER NETWORK, HELPING PEOPLE BETTER UNDERSTAND AND MAXIMIZE THEIR INSURANCE COVERAGE AND BENEFITS, AND GET HELP WITH OTHER NEEDS RELATED TO DAILY LIFE WITH CF. CASE MANAGERS ALSO ASSISTED WITH FINDING RESOURCES FOR ISSUES RELATED TO LIFE WITH CF THAT CAN AFFECT ACCESS, INCLUDING BASIC LIVING AND FOOD EXPENSES. TODAY, MORE THAN HALF OF ALL PEOPLE WITH CF ARE AGE 18 OR OLDER. IN 2021, APPROXIMATELY 1,175 PEOPLE WITH CF AND THEIR FAMILY MEMBERS JOINED VIRTUAL EVENTS, INCLUDING BREATHECON, RESEARCHCON, AND CF MINICON: TRANSPLANT, DESIGNED BY AND FOR ADULTS WITH CF, THEIR FAMILIES, CLINICIANS, AND RESEARCHERS. THESE GATHERINGS PROVIDED AN OPPORTUNITY FOR THE CF COMMUNITY TO CONNECT, SHARE, AND LEARN FROM PEERS THROUGH OPEN AND HONEST DIALOGUE. |
| FORM 990, PART III, LINE 4C: |
PUBLIC AND PROFESSIONAL INFORMATION AND EDUCATION - TO SUPPORT ITS MISSION, THE CF FOUNDATION CREATED EDUCATIONAL CONTENT DESIGNED TO INFORM AND SUPPORT PEOPLE WITH CF AND THEIR FAMILIES, MEDICAL PROFESSIONALS, AND THE GENERAL PUBLIC ABOUT THE DISEASE. IN 2021, THERE WERE 289 PUBLICATIONS AND 32 VIDEOS PRODUCED AND MADE AVAILABLE TO SUPPORT EDUCATION AND AWARENESS. YEAR-ROUND MEETINGS AND CONFERENCES PROVIDE UPDATES FOR CF RESEARCHERS, PHYSICIANS, AND ALLIED HEALTH PROFESSIONALS AND CREATE OPPORTUNITIES FOR COLLABORATION ON FUTURE CF RESEARCH PROJECTS AND TREATMENT/CARE EFFORTS. IN 2021, OVER 3,033,553 UNIQUE VISITORS CAME TO THE CF FOUNDATION'S WEBSITE. THE FOUNDATION LAUNCHED A NEW WEBSITE IN 2021 TO BETTER SUPPORT AND INFORM PEOPLE WITH CF AND THEIR FAMILIES, CLINICIANS, AND RESEARCHERS. IN ADDITION TO MANY UPDATED ARTICLES AND CONTENT SECTIONS BUILT FOR THE NEW WEBSITE, THE FOUNDATION PUBLISHED 98 BLOG POSTS. |
| FORM 990, PART VI, SECTION B, LINE 11B |
REVIEW OF 990 BY GOVERNING BODY THE CYSTIC FIBROSIS FOUNDATION BOARD OF TRUSTEES RECEIVES A DRAFT OF THE FORM 990 PRIOR TO ITS BEING FILED, WITH SUFFICIENT TIME FOR REVIEW AND COMMENT ALLOWED. THE COMPENSATION COMMITTEE OF THE BOARD OF TRUSTEES AND THE FOUNDATION'S ERISA ATTORNEYS REVIEW THE EXECUTIVE COMPENSATION SECTIONS OF THE FORM 990. THE AUDIT COMMITTEE OF THE BOARD OF TRUSTEES ALSO REVIEWS THE FORM 990 AS PART OF ITS CHARTERED RESPONSIBILITIES. IN ALL CASES THE CYSTIC FIBROSIS FOUNDATION BOARD OF TRUSTEES RECEIVES A COMPLETE COPY OF THE FINAL FORM 990 BEFORE IT IS FILED. |
| FORM 990, PART VI, SECTION B, LINE 12C |
CONFLICT OF INTEREST MONITORING A CONFLICT OF INTEREST DISCLOSURE STATEMENT IS COMPLETED ANNUALLY BY EACH BOARD MEMBER, OFFICER, AND KEY EMPLOYEE. POTENTIAL CONFLICTS ARE REPORTED TO THE GOVERNANCE COMMITTEE OR THE BOARD OF TRUSTEES. WHEN ANY MATTER IS DEEMED A POTENTIAL CONFLICT OF INTEREST AND REQUIRES ACTION BY THE BOARD OF TRUSTEES, THE INTERESTED TRUSTEE OR OFFICER IS REQUIRED TO BE EXCUSED FROM THE ROOM IN WHICH THE BOARD OR ITS COMMITTEE IS MEETING, MAY NOT PARTICIPATE IN THE FINAL DELIBERATION OF THE MATTER, AND MAY NOT VOTE ON THE MATTER. THE ORGANIZATION ENFORCED THE POLICY DURING 2021 AND HAD NO UNRESOLVED CONFLICTS OF INTEREST. |
| FORM 990, PART VI, SECTION B, LINE 15 |
DETERMINING COMPENSATION: LINE 15A AND 15B THE TOTAL COMPENSATION OF EXECUTIVES AT THE CYSTIC FIBROSIS FOUNDATION IS SPECIFICALLY DESIGNED TO ATTRACT AND RETAIN THE HIGHEST QUALIFIED EXECUTIVE AND MEDICAL TALENT TO FULFILL THE CRITICALLY IMPORTANT MISSION OF CURING CYSTIC FIBROSIS AND PROVIDING ALL PEOPLE WITH THE DISEASE THE OPPORTUNITY TO LEAD FULL, PRODUCTIVE LIVES. THE INDEPENDENT COMPENSATION COMMITTEE OF THE CF FOUNDATION'S BOARD OF TRUSTEES FOLLOWS THE PROCESS DESCRIBED IN THE IRS INTERMEDIATE SANCTIONS RULES WHEN DETERMINING COMPENSATION. SPECIFICALLY, THE COMMITTEE: (1) IS COMPOSED ENTIRELY OF NON-EMPLOYEE VOLUNTEER DIRECTORS WHO HAVE NO FAMILIAL, BUSINESS OR SIGNIFICANT PERSONAL RELATIONSHIPS WITH THE CF FOUNDATION OR ITS EXECUTIVES. (2) ASSESSES THE SHORT-TERM AND LONG-TERM CONTRIBUTION AND PERFORMANCE OF EACH EXECUTIVE IN MEETING VERY DEFINITIVE AND QUANTIFIABLE OBJECTIVES FOCUSED ON THE CF FOUNDATION'S MISSION SUCCESS. (3) ENGAGES AN INDEPENDENT COMPENSATION CONSULTING FIRM TO COMPILE APPROPRIATE COMPARABILITY DATA (INCLUDING COMPENSATION MARKET INFORMATION FOR PEERS WITH WHOM THE CF FOUNDATION COMPETES FOR EXECUTIVE TALENT) FOR COMMITTEE RELIANCE. THE COMMITTEE MEETS WITH REPRESENTATIVES OF THE CONSULTING FIRM TO REVIEW THIS DATA IN DETAIL. (4) REVIEWS ALL ELEMENTS OF EACH EXECUTIVE'S TOTAL COMPENSATION, INCLUDING BUT NOT LIMITED TO BASE SALARY, BONUSES, PERQUISITES, FRINGE BENEFITS, AND INCENTIVE AND DEFERRED COMPENSATION ARRANGEMENTS. UPON THE EXECUTIVE'S HIRE, AND AT EACH POINT IN TIME THEREAFTER AT WHICH A NEW OR REVISED COMPENSATION ARRANGEMENT IS UNDER CONSIDERATION WITH RESPECT TO THE EXECUTIVE, THE COMMITTEE MEETS WITH ITS INDEPENDENT COMPENSATION CONSULTING FIRM BEFORE THE ARRANGEMENT IS IMPLEMENTED TO EVALUATE THE REASONABLENESS OF THE ARRANGEMENT BY COMPARING BOTH THE ARRANGEMENT ITSELF AND THE EXECUTIVE'S ENTIRE COMPENSATION PACKAGE TO COMPENSATION PACKAGES PAID BY SIMILARLY SITUATED ORGANIZATIONS FOR FUNCTIONALLY COMPARABLE POSITIONS. (5) DOCUMENTS, CONCURRENTLY WITH ITS DETERMINATION, THE BASIS FOR ITS DETERMINATION IN THE MINUTES OF ITS MEETING. THESE MINUTES ARE REVIEWED, REVISED IF NECESSARY AND APPROVED AT THE FOLLOWING MEETING OF THE COMMITTEE. (6) OBTAINS A WRITTEN LEGAL OPINION CONCERNING THE COMMITTEE'S COMPLIANCE WITH THE IRS INTERMEDIATE SANCTIONS RULES. THE PROCESS DESCRIBED ABOVE WAS USED TO ESTABLISH COMPENSATION FOR THE FOLLOWING OFFICERS OR KEY EMPLOYEES OF THE ORGANIZATION: PRESIDENT & CEO EXECUTIVE VICE PRESIDENT, COO AND SECRETARY EXECUTIVE VICE PRESIDENT AND CFAO CHIEF INVESTMENT OFFICER SENIOR VP, THERAPEUTICS DEVELOPMENT EXECUTIVE VICE PRESIDENT & CHIEF SCIENTIFIC OFFICER EXECUTIVE VICE PRESIDENT & CHIEF MEDICAL OFFICER THE PROCESS WAS LAST UNDERTAKEN IN 2020 WITH RESPECT TO COMPENSATION TO BE PAID IN 2021 TO ALL THE OFFICERS/KEY EMPLOYEES NAMED ABOVE. |
| FORM 990, PART VI, SECTION C, LINE 19 |
PUBLIC INSPECTION FORMS 1023 AND 990-T FOR THE ORGANIZATION WERE AVAILABLE ON ITS WEBSITE, CFF.ORG AND THE ORGANIZATION'S WEBSITE PROVIDED A DIRECT LINK TO ITS FORM 990 ON GUIDESTAR.ORG. THE FOUNDATION'S GOVERNING DOCUMENTS (BYLAWS AND ARTICLES OF INCORPORATION) WERE AVAILABLE UPON REQUEST BY CONTACTING THE NATIONAL OFFICE OF THE CYSTIC FIBROSIS FOUNDATION IN WRITING OR BY PHONE. INFORMATION ON HOW TO OBTAIN THE GOVERNING DOCUMENTS WAS AVAILABLE ON THE FOUNDATION'S WEBSITE, WWW.CFF.ORG, DURING 2021. THE BOARD AND OFFICER CONFLICT OF INTEREST POLICY AND THE AUDITED FINANCIAL STATEMENTS WERE AVAILABLE ON THE FOUNDATION'S WEBSITE, WWW.CFF.ORG, DURING 2021. |
| FORM 990, PART VI, LINE 10B: |
CYSTIC FIBROSIS FOUNDATION HAS NUMEROUS OFFICES LOCATED ACROSS THE UNITED STATES WHICH ADHERE TO THE POLICIES AND PROCEDURES OF THE ORGANIZATION. |
Attach to Form 990 or 990-EZ.