WOMEN SHAPING HISTORY 2016
Phyllis L. Kossoff
Inspiration for Career Path: When our firstborn, a daughter, failed to thrive, beset by wheezing and chronic cough, she was diagnosed with Cystic Fibrosis (CF), an unknown genetic disease with a life expectancy of 3-5 years. Dealing as best we could with this traumatic revelation, my husband, Burt, and I sought the few known other parents of CF children. Banding together we set out to save our young.
Challenges and Resolutions: Armed only with youth and a fierce determination, we began a long journey to combat Cystic Fibrosis. Those initial meetings in New York laid the groundwork for the creation of the National Cystic Fibrosis Research Foundation, now the Cystic Fibrosis Foundation (CFF). During the formative years, long before cell phones or the internet, Cystic Fibrosis was not a paragraph nor even a line in any medical text. As chair of the New York area Greater New York/ Northern New Jersey Chapter, I worked feverishly. Marshalling family, friends, and an extraordinary cadre of citizen volunteers and members of the media, we mounted an intensive campaign to educate the medical profession and create public awareness. Capitalizing on this momentum, I guided the organization of the first of many public appeal crusades that lead to over 400,000 households annually receiving information about CF as part of our multilevel fundraising, furthering the CF care and research agenda.
In the 1960s, the populace was slowly becoming aware of the unrelenting menace of this insidious disease, which if untreated, suffocated the lungs and starved the body. One on 31 people is a carrier of the gene that causes CF, impacting 30,000 people in North America and 70,000 worldwide. Managing CF requires a time consuming daily regimen of medications and treatments (chest physical therapy and exercise, mucous thinning aerosols, antibiotics, and a myriad of enzymes and digestive supplements). To minimize lung damage, care needs to be taken to protect against respiratory infection. In the early years, numerous clinical visits and hospitalizations, were a constant. The physical, emotional/psychosocial, and financial toll placed upon CF children and their families was enormous.
Beginning in 1961, aided by exceptional volunteers, expert medical representation, and the good offices of Senator Jacob Javits, I spearheaded a successful 4 year lobbying effort. Testifying before the NY State Joint committee on Mental Retardation and Physical Handicap, we petitioned to have CF children specifically included in the New York State Aid Program of the Crippled Children's Service Act and Title IX Medicare. These programs still benefit CF families today.
Elected to the National Board of the CFF, I served as Region II Trustee. As founding President of the New York Chapter, incorporating the Junior Committee and Professional Businessmen's Committee, always with the assistance of my husband and a singularly dedicated Board, I directed a vigorous 17 year education, research and care program resulting in historic net monies to the advancement of national CF medical research.
Turning Point: In her freshman year at Barnard , Stefi, my daughter lost her battle with cystic fibrosis. Scant solace that at 19 she had exceeded the CF median life expectancy, then 10 years of age. The outpouring of grief and sorrow gave testimony to the beauty and grace of this young life lived with incomparable inner strength and courage. "Before she died, she lived" Devastated by this loss, I cut back my work in cystic fibrosis. After a few years, driven by what I perceived as my unfulfilled mission, and a relentless imperative to validate my daughter's legacy, I once again assumed leadership service.
In 1983, as a founding member and President of the reconstituted Cystic Fibrosis Association of Greater New York, with nearly all of the overhead costs covered by donated services, we enlisted a wide spectrum of support of representatives of the arts, sports, broadcast and print media, business and medical community, area organizations, with city, state and national governmental representation. With continued emphasis on Cystic Fibrosis research, care and education agenda, we expanded program inaugurating three new concentrates.
The Medical Grants Program focused on genetic and biomedical research with proposals peer-reviewed by the expert team of researchers and clinicians of the CFA Medical Advisory Council. Grants were awarded to clinical and basic researchers at lending medical institutions in the greater New York area. The Career Awards Scholarship Grants Program was launched in 1987 to assist young adults with CF in school and the working world. This program, the first of its kind, served as a prototype for the rest of the nation as it answered to the needs of a newly emerging CF young adult population. The program was renamed in 1999 for dear friend and devoted colleague, Dr. John Z. Jacoby III, a physician and mentor who succumbed to the disease himself in November 1997.
Taken before his time, in April 2000, my beloved husband and CFA's magnificent leader and benefactor, lost his battle with melanoma. In 2001, The Burton Kossoff CF Young Adult Memorial Grants Program was initiated. The program, tailored to their special needs, served to facilitate the transition of CF patients to complete support and adult care. With improvement in quality of life, and median life expectancy at 30 years, and a now foreseeable control and cure for cystic fibrosis, I retired.
Influential Mentors: Circumstances of my life confluenced, I think, to prepare me for the challenges to come. Having been raised in a single parent household, (my father died when I was two), needing to care for her family, my mother was the first woman manufacturer's representative in the pape industry. I grew up schooled in the dictum that No was the beginning of a conversation. Notwithstanding, my childhood was happy as I recall, but always with the knowledge that it was my responsibility to "get on with it". Graduated from Hunter College, at 20 years of age I was teaching as a substitute in the New York School System. Securing an appointment after multiple examinations, I had a full position on a common-branch license teaching in junior high school in East Harlem while finishing my M.A. at Teacher's College, Columbia, at night. Living in a different time, I had no opportunity to "find myself". At 21 years of age, I was married.
Coping with my daughter's illness, in unchartered waters, I was for the most part, selfmentored. My lifelong habit of collecting aphorisms just segued here where at the onset I thought, "better to light a candle than to curse the darkness". During the ensuing more difficult years, I exhorted myself with "man stumbles over pebbles, but never over mountains." As time went on my personal and often spoken mantra became "no matter how long the night, the day is sure to come".
That said, however, in matters medical I was privileged to have the ongoing counsel of Carolyn R. Denning, M.D. , a pioneer and visionary in the field of cystic fibrosis. Dr. Denning served as Director of the CF center, at the Babies Hospital, Columbia Presbyterian Medical Center and subsequently as Director of CF Center at St. Vincent's Hospital Medical Center. I was aided and encouraged by the first chairman of CFA's Medical Advisory Council, Richard J. Bonforte, M.D. Professor of Pediatrics and Director of Mount Sinai CF Center. We are more than grateful also for the many years of selfless service of Medical Chair, James P. Smith M.D., Professor of Clinical Medicine at Cornell University Medical College.
Future Goals: After "my retirement", I thought to go on a nice long vacation. Encouraged, however, by the impactful annual lecture in pathogenesis and treatment of cystic fibrosis, established in my daughter, Stephanie's, memory at the Babies Hospital Columbia Presbyterian Medical Center 37 years ago, I decided to inaugurate a similar discourse in honor of my husband. At Baruch College, Burton Kossoff was a founding member and 20 year Trustee of the Baruch College Fund and Trustee Emeritus of the College.
The Burton Kossoff Leadership Lecture established in 2003 is an enormously eventful annual showcasing corporate heads who share their perspectives on the most pressing business issues of the day, and strategies of the most successful business leaders. This series has included Jack Welch, CEO of General Electric; Richard Parsons, Chairman and CEO of Time Warner and Ian Cook, Chairman, President and CEO of Colgate-Palmolive. The Tenth Anniversary lecture presented to an overflow audience of students, faculty and alumni, was delivered by Henry R. Kravis, Co-Founder, Co-Chairman and Co-CEO of Kohlberg, Kravis, Roberts and Company.
Seduced by the slowly stirring long dormant recollections of the challenges and rewards of the academic arena, my attention gravitated towards my alma matter, Hunter College, where citing "significant achievement and contributions to society", I had been privileged to be inducted in 1997 into the "Hunter Hall of Fame". Excited by the new energy on campus and the projected renaissance of Roosevelt House as a Public Policy Institute, I expanded my now growing network with the annual Phyllis L. Kossoff Lecture. This lecture provides a forum that brings leading figures in public life to Roosevelt House (where Franklin and Eleanor had lived) for conversation and reflection on pressing issues of domestic and international concern. Speakers have included Supreme Court Justice, Sandra Day O'Connor ; marriage equality litigators, David Boies and Ted Olsen; former Rep. Barney Frank (D-Mass) and Chilean President, Michelle Bachelet, then UN Under Secretary General for gender equality and empowerment of women.
Since 2001, I have served on the President's Advisory Council (PAC) of Teacher's College, Columbia University. My lectureship at TC in education and policy, has been particularly rewarding. In 2009, the college hosted U.S Secretary of Education, Arne Duncan, and in subsequent years: Meryl Tisch, Chancellor of the New York State Board of Regents; Dennis Wolcott and Carmen Farina, Chancellors of the New York City Public Schools. On February 4th of this year, the first major policy address of the new State Commissioner of Education, Mary Ellen Elia was delivered at TC. Teachers College has characterized the Kossoff Lecture as "helping to establish TC as the nation's premier address for the national conversation in education."
Proudest Accomplishments: Proud is a difficult word. I am immensely gratified to have been a part of the monumental effort that has seen the dramatic climb of Cystic Fibrosis median life expectancy from 3-5 years to over 40 years today. With current advances in quality of life, sophisticated medicines specifically targeting the basic genetic defect, enhanced airway clearance techniques and transformative treatments, Cystic Fibrosis poised to become a manageable disease for many.
Personal satisfaction has been mine through the vibrancy afforded my life's existence by the interaction with students, faculty and the towering personalities that have become the hallmark of the Kossoff Lectures.
For true pride in accomplishment, I point to my beloved and supportive family - my extraordinary son and daughter-in-law, and my four incomparable grandsons.