Cystic Fibrosis Foundation - Planned Giving Program


Named in honor of one of the pioneering medical leaders in cystic fibrosis, The Paul di Sant’Agnese Society was established to recognize all those generous individuals who have included the Cystic Fibrosis Foundation in their long-term plans, through a bequest, life-income gift, or other planned gift. One of the CF Foundation’s most valued groups of supporters, The Paul di Sant’Agnese Society, honors the tradition of excellence that Dr. di Sant’Agnese pursued throughout his distinguished medical career.

As a young physician at Columbia Presbyterian Medical Center, Dr. di Sant’Agnese was one of the first physicians to specialize in the care of children diagnosed with the then "new" disease of cystic fibrosis. Over time, he came to understand CF as a disease of faulty metabolic regulation with a host of resulting complications, and first published on nutrition and the efficacy of antibiotic treatments, both ingested and inhaled, in 1946. His next and most lasting legacy to CF science, however, was to develop the primary diagnostic tool we still use today: the sweat test.

In 1948, New York during a terrible heat wave, Dr. di Sant'Agnese and colleagues at Columbia noticed that the majority of patients admitted with heat prostration were CF patients. In subsequent summers, most notably during a second heat wave in 1952, Dr. di Sant'Agnese observed that the ratio of CF children admitted for heat prostration continued to be significantly higher than children without CF. These children were losing electrolytes at two to six times the normal rate--in other words, their perspiration was abnormally salty. In 1953, Dr. di Sant'Agnese and a colleague developed the sweat test, which measures for abnormal chloride levels in perspiration. The sweat test is that rare test: painless and non-invasive, it helps sick children find a reason and a path to treatment for their devastating symptoms without subjecting them to more hurt and fear.

Dr. di Sant'Agnese continued throughout his life to help CF patients and their families. He participated in the establishment of the Cystic Fibrosis Foundation in 1955. He founded the International Cystic Fibrosis Association in 1965. As a physician at Columbia University Hospital, and later as chief of NIH's Pediatric Metabolism Branch and a Professor of Pediatrics at Georgetown University, Dr. di Sant'Agnese produced studies and articles on a number of topics relating to CF into the 1990s.

Thanks to Dr. di Sant'Agnese's life-long dedication to treating individuals with cystic fibrosis, and the example he set for the thousands of scientists and physicians who have come into the CF community since the 1940s, we found the root of this disease and the cause of the symptoms that make life more difficult for the children and young people with CF. We have found the scientific reasons for the early observations of Dr. di Sant'Agnese and his colleagues.

How to Join

The following types of commitments, confirmed in writing and subject to certain restrictions, qualify you for membership in The Paul di Sant’Agnese Society:

If you have already included the CF Foundation in a bequest or other planned gift, we hope you will let us know. Your willingness to be listed as a member of The Paul di Sant’Agnese Society encourages others to follow your example. We acknowledge and respect those who wish to remain anonymous, but we urge you to let us know of your plans on a confidential basis in any case. It supports the CF Foundation’s planning for the future. Of course, if you have not yet included the CF Foundation in your plans and you would like to explore the best options for you and your family, do not hesitate to contact us. We would be glad to assist you on a confidential basis and without any obligation.

Benefits of Membership

In an effort to preserve your legacy for the purpose it is intended, we have chosen a few simple ways to recognize your commitment. Each new member will receive a certificate of appreciation and letter of thanks from the President and CEO of the CF Foundation, along with a handsome recognition gift that we hope you will treasure for years to come.

In addition to these small expressions of gratitude, we hope you will allow us to recognize you as a member of the The Paul di Sant’Agnese Society in our annual donor recognition publication. Your inclusion in this publication encourages others to join in this important effort. Lastly, as a member of The Paul di Sant’Agnese Society, you will receive timely information, tips, and ongoing professional gift planning services from the Office of Planned Giving.

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