Cystic Fibrosis Foundation- Headquarters

“Review of 990 by governing body the cystic fibrosis foundation board of trustees receives a draft of the form 990 prior to it being filed, with time for review and comment. 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. The cystic fibrosis foundation board of trustees receives a complete copy of the final form 990 before it is filed.”

“Conflict of interest monitoring a conflict of interest disclosure statement is completed annually by each board member, officer, and key employee. Potential conflicts for board members and officers are reported to the board's governance committee. The cf foundation maintained the policy in 2023.”

“Determining compensation: lines 15a and 15b the total compensation of executives at the cystic fibrosis foundation is specifically designed to attract and retain the highest qualified talent to fulfill the cf foundation's critcally important mission. 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) 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. (3) reviews all elements of each executive's compensation, before any new compensation arrangement is implemented, to evaluate the reasonableness of the arrangement based on the appropriate comparability data and the executive's performance. (4) 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. The process described above was used to establish compensation for the following officers or key employees of the organization: president & ceo executive vice president, chief operating & financial officer chief investment officer senior vice president, clinical research executive vice president & chief scientific officer executive vice president & chief medical officer the process was last undertaken in 2022 with respect to compensation to be paid in 2023 to the officers/key employees named above.”

“Public inspection forms 1023 and 990-t for the organization were available on its website, cff.org. The foundation's governing documents (bylaws and articles of incorporation) were available upon request by contacting the cystic fibrosis foundation in writing. Information on how to obtain the governing documents was available on the foundation's website, www.cff.org, during 2023. The board and officer conflict of interest policy and the audited financial statements were available on the foundation's website, www.cff.org, during 2023.”

“Cystic fibrosis foundation has numerous offices located across the u.s. Which adhere to the policies and procedures of the organization.”

“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.”

“Medical (and research) programs - the cystic fibrosis foundation is the world's leader in the search for a cure for cystic fibrosis, a progressive, genetic disease that affects approximately 40,000 people in the u.s., and more than 100,000 worldwide, which can include people from every racial and ethnic group. The cf foundation funds hundreds of millions of dollars in research to help discover/develop effective cf therapies and promote highly specialized care, with $250 million invested. Due in part to the cf foundation's efforts, the life expectancy of people with cf has more than doubled in the last 30 years. The cf foundation funds discovery and development research conducted by biotechnology companies and academic research centers. It funds a specialized cf clinical trials network of 91 foundation-accredited care centers. As of december 2023, the cf foundation drug development pipeline had 38 therapies in development including treatments that address complications, like infections, and genetic therapies that could one day lead to a cure for all people with cystic fibrosis, including those with rare and nonsense disease-causing mutations. To support its mission, the cf 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 2023, the foundation provided more than $49 million for care centers and clinicians. This work includes developing care guidelines, funding professional development awards, and advancing quality improvement of the highly specialized care needed to live with the disease. The cf foundation also manages a patient registry of more than 32,600 people with cf, 752 of whom are newly diagnosed. 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.”

“Community services - the foundation provides support for people with cf and their families as they manage the physical, emotional, and financial challenges of living with cf. This is done through supporting high-quality, specialized care, providing information and tools to help people direct their own care, and developing programs to help people with cf and their loved ones connect so they can learn from and celebrate each other. Lack of adequate insurance coverage for cf therapies has been a consistent concern for those living with the disease and their families. The cf foundation compass is a highly personalized service that is tailored to an individual's circumstances related to complex insurance, financial, legal, and other issues that can prevent access to cf therapies and care. In 2023, skilled compass case managers addressed 6,678 inquiries 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. By connecting people with cf to resources to help them pay bills or other services, the cf foundation saved clients more than $1.8 million in 2023. The cf foundation held more than 1,000 national and chapter events in 2023 for people with cf and their family members. Virtual events, including breathecon, researchcon, and roseup, were 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.”

“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 2023, there were 106 publications and 64 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 2023, 2.1 million unique visitors came to the cf foundation's website. The cf foundation published 212 new content pages, made 177 content updates, and published 75 cf community blog posts.”