the alliance at 30

A parable and prelude

In his great novel The Brothers Karamazov Dostoyevsky tells a parable. He describes how the youngest brother and hero of the story, Alyosha, confronts the death of his beloved mentor Zossima, the abbot of the monastery Alyosha entered at age 19 in search of a righteous life. At first, Alyosha questions everything he believes, so unjust is the death of such a wise and revered man of God. But after a strange dream he awakens and sees the world as if for the first time, whereupon he runs from the monastery to the yard outside, kneels and kisses the earth remembering an admonition to “water the earth with tears of joy.” When Alyosha stands, Dostoyevsky writes, he is no longer a teary wreck of a boy but a champion and a hero.

What follows is a true story made possible because of the coming together of champions and heroes–that is, as Dostoyevsky’s parable implies, those who embrace the fullness of life and mortality. The rallying cry and leadership for what was, in effect, a call to arms to take the fight to cancer rather than to be intimidated by it, came from a mother whose daughter lost her fight against a rare cancer. In 1991, when this mother decided to join forces with what was then the Roswell Park Cancer Institute, a new collective force of compassion, persistence, and generosity–soon to be known as The Roswell Park Alliance Community Group–coalesced and brought life and hope to Western New York. This flood of good will not only rebuilt–it transformed–the Roswell Park Cancer Institute, known today as the Roswell Park Comprehensive Cancer Center. That mother and the first members of  The Alliance, like Dostoyevsky’s hero, looked the specter of death in the eye and chose life by fulfilling the critical role a community is called to play with doctors, scientists, and hospital staff in the fight against cancer. 

More specifically, the genesis of The Alliance was the bond between that mother and her child. The maternal bond is primal and fierce and when danger lurks it finds expression in many ways. For this mother, that bond was multiplied exponentially by a profound sense of empathy heightened by her daughter’s struggle. The battle for her daughter became her motivation to fight for every parent and child who would face what she and her daughter had to face. Indeed, it became a battle for every family with a loved one of any age suffering with cancer. So it was that The Alliance was born out of one family’s loss and their choice, in the wake of death, to affirm life. Now, on its three-decade anniversary and with the passing of the baton of leadership, The Roswell Park Alliance Community Group enters a new chapter with new challenges in a rapidly changing landscape of medical research and healthcare. Yet, the vision to bring healing and hope to cancer patients and their families that galvanized The Alliance at its beginning is as fresh and vital today as it was then. 

Saving Not Just Lives But A Comprehensive Cancer Center

I.

In 1989, four-year-old Katherine Gioia was diagnosed with synovial sarcoma. As dark as the shadow was that the malignancy cast over her, her personality emanated an inextinguishable light that never wavered. Indeed, Katherine’s disposition in the face of her illness–so remarkable for her age–bolstered her parents and family members, her doctors and nurses, her teachers at the Elmwood Franklin School, and anyone with whom she came into contact. Certainly, all children–given their candor and curiosity, and their devotion to those who love and care for them–are precious and extraordinary. Yet, there was something special about Katherine who conveyed an inner strength, even wisdom, well beyond her years. Where this strength came from, what caused it, is something of a mystery. No doubt it would have been increasingly evident in the course of her growth and development into adulthood. But the fact of her illness and the final year of her life, after her diagnosis, seemed to call forth and reveal, in full, her resilience and joy. She possessed dignity, power, humor, calm, and peace as she and her parents met with the teams of healthcare professionals who treated and cared for her and as she endured complicated, sometimes painful procedures.

Perhaps the source of Katherine’s gifts is not completely obscure. Her self-confidence and resilience that came to full blossom as the weeks and months went by were, to be sure, to some degree inherited from her mother whose strength of character and fierce resolve also came to full expression during her daughter’s journey with terminal illness. The first and lasting impression Anne Gioia makes is of a warm and welcoming neighbor, not of a dedicated leader and combatant against one of America’s leading causes of death. Her demeanor is light-hearted, often playful in a way that easily establishes trust and connection, yet when the subject shifts to serious matters, her energy and attention, conveyed by piercing blue eyes, focuses with full intensity on whatever the subject might be. It was this combination of transparent warmth and authenticity that found expression in her daughter and–combined with Anne’s capacity for strategic action–gave the emergent core of volunteers she recruited, and those who followed, the leadership that has inspired and sustained The Alliance for three decades.

Anne Gioia describes herself, at the time of Katherine’s diagnosis 32 years ago, as a stay-at-home mom, devoted to raising two sons and her daughter, her youngest. Yet, what evolved from the first days of that life-changing diagnosis and Katherine’s worsening, year-long illness was the equivalent of a summons to public service. The reorienting of personal and family priorities, living under the cloud of an aggressive disease, and observing Katherine’s resilience and courage, redefined what was considered “normal” in the Gioia household. It was a costly education in the services and treatment of malignant disease. Many trips to Roswell and other hospitals and specialists with their daughter to undergo prescribed procedures including hospital stays took Anne and her husband Richard into a world they never expected to enter as young parents. Losing Katherine was the catalyst for Anne’s decision to take up the fight against cancer. After discerning what that would mean for her and her family, she informed Cindy Eller, Roswell’s first Director of Development and Marketing, that she would give to Roswell the time and energy she would have given to raising her daughter because, she said, in words still tinged with maternal fire: “You don’t take a child from its mother.” 

In hindsight, the miracles Anne Gioia and those who rallied around a cause bigger than any one of them, even than all of them together, as well as work that would extend beyond their lifetimes–the miracles they accomplished would not have been possible with anything less than the singular commitment she made. For Anne and Richard, the fight for their daughter was inseparable from what became, after Katherine’s passing, the fight to save Roswell itself, encumbered, in those years, by a pervasive public dread of anything having to do with the disease its mission was to defeat. Remarkably, this fear was induced in part by local practitioners who perpetuated the myth that the Institute “experimented” on its patients, often leading to their deaths. 

As if this wide-spread apprehension and the public relations quagmire it caused was not enough, Roswell Park Cancer Institute was essentially a “ward of the state.” At the time, the legislature in Albany approved allocations within the Department of Health budget earmarked for the Institute. Yet, the Department, a multi-layered bureaucracy, often failed to coordinate decision-making or would withhold or move funds to other healthcare priorities in the state. The cumbersome relationship between the Institute and the Department of Health was exacerbated by the Department’s regulatory oversight of services and buildings. Not infrequently, funds already earmarked by the legislature that were needed to meet regulatory standards would turn out to have been allocated elsewhere in the state healthcare system. In those days, the Department of Health insisted that all New York State-funded healthcare facilities from public research labs to nursing homes to rehabilitation centers operate by the same rules. In addition, its civil service exams did not allow for differences in expertise and training required in a medical or research setting, and civil service salaries were non-competitive, especially at faculty and leadership levels. 

Consequently, The Alliance would confront, out of necessity, the prejudicial attitudes and stereotypes that isolated the Institute from almost every avenue of support including under the flawed charter of governance that displaced local decision-making for the Institute. It is no small irony that this historic Buffalo institution–among the first two or three single-purpose cancer centers in the nation–was prohibited from receiving the generous and enthusiastic volunteer and financial support other local hospitals enjoyed, not to mention necessary, unencumbered support from state government. 

II.

Little did Anne Gioia know the full magnitude of the mission she was about to undertake. But she was aware that the task before her was big and complicated and like all effective leaders she began to surround herself with people who had the skills she knew would be needed to organize and secure community support for the Institute. Her first strategic decision was to recruit her sister-in-law, Donna Gioia, who journeyed every step of the way with Anne and Richard through Kathrine’s illness. The experience and skills Donna had acquired over the years as a leader in many of Buffalo’s largest nonprofit institutions would be essential for the challenges the new project faced. She understood nonprofit governance, organization, and fundraising. Together, Anne and Donna became a formidable leadership team as co-chairpersons serving The Alliance in that capacity until the recent transition to a new chairperson. Anne’s focused commitment and charismatic leadership attracted and inspired members and support for the new board and was complemented by Donna’s wise guidance and steady hand in forming and organizing its structure; their sharing the leadership of the board proved to be the perfect formula for success. 

But the co-chairs soon realized other skills were also needed and sought someone who was familiar with the world of the Albany legislature and who could enable The Alliance to partner with Cynthia Schwartz, Vice President for Governmental Affairs at Roswell. Schwartz needed a community voice and face to extend the reach and impact of her office which had been at work lobbying for fiscal support and governance changes since the late 1980s. Anne and Donna had just the person–their good friend Pam Jacobs. Together, Jacobs and Schwartz shaped The Alliance into a powerful community presence in the state legislature; they placed a human face on the need for a new charter of governance as well as major funding for the complete replacement of the Institute itself. Alliance members lobbied elected officials with compelling human stories of Roswell’s indispensable work in Western New York. 

When it was time, in 1991, to recruit the first Alliance volunteers, Anne and Donna identified 55 persons from among their friends and contacts whom they deemed personally and professionally suited to launch the new advocacy and fundraising arm of the Institute. Given the apprehensive public perception of the Institute, they sent more invitations than they assumed would be accepted and were stunned when virtually all of those asked to serve signed up. Aware that the willingness of those who agreed to lend their skills did not necessarily mean they were free of their own fear of cancer, the leaders wisely decided to hold the first meeting of the new board offsite, away from the building itself which evoked such anxiety, and to propose a rigorous process to educate every board member about the Institute and its mission. New board members were required to participate in an in-depth orientation including a tour of the facility from patient rooms to clinics to research labs. That such a major step recruiting a large and eager board of local community members, many of whom were prominent in their professional fields, could take place so quickly was, in hindsight, a sign of what was to come. 

One individual who more than anyone else understood the significance and promise of the new Alliance was Roswell Park CEO Dr. Thomas Tomasi. Dr. Tomasi had established a distinguished career as an internationally recognized immunologist and researcher at Rockefeller University and then the University of New Mexico Cancer Center, which he directed before coming to Buffalo in 1986. At the time, the top priority for Roswell was to find a CEO who could attract and retain distinguished researchers given the Institute’s mission for conducting leading-edge research. Shortly after his arrival, Dr. Tomasi, in addition to implementing a plan to strengthen Roswell’s reputation for excellent research, organized the first Community Advisory Council comprised of Western New York business and community leaders, noting that strong research alone would not sustain the Institute. A positive public perception of the institution and its mission would make a difference in countless ways, he said, including public and private financial support. Flexible funding for research was indispensable for seeding and maturing the best and latest ideas for treatment and cure. Because cancer research depended on clinical trials for proof of principle to qualify for NIH and other foundation funding for long-term study and research, Roswell needed an increasingly robust pool of research dollars for preliminary clinical trials. Without the ability to finance such seed trials to open the door to major clinical trials, the Institute’s mission as a research center would soon erode if not fail. 

By the time Dr. Tomasi’s successor Dr. David Hohn, who had been second in charge of the massive MD Anderson Cancer Center in Houston, arrived in 1997, The Alliance had been at work for six years with the full support of Dr. Tomasi and senior staff. One likely cause for the quick coalescing and focus of The Alliance was its first order of business to win major support from Albany. Thanks to a comprehensive strategic plan–visiting legislators in the state capitol and hosting them in Buffalo–as well as an “all hands on deck” push from senior staff, the Community Advisory Council, and local legislators, $241.5 million was awarded by the state in 1992 to construct a new hospital, clinic, and research building, as well as a pledge to consider legislation for a new charter.

Given the significant changes in store for the Institute following the major victory in Albany–expanding patient care and research with the ongoing construction and expansion of the physical space (dedicated in 1998)–the search for Dr. Tomasi’s successor in the late 1990s had prioritized administrative leadership for continued stability and growth. Dr. Hohn’s experience in Texas proved to be helpful in negotiating with Governor George Pataki some of the final complexities of the new charter. Enabled by the extensive groundwork laid by Dr. Tomasi and the impact of The Alliance and other key players, Dr. Hohn negotiated, in 2000, a new governance model–a Public Benefit Corporation–with Governor Pataki. 

The new agreement ensured that Roswell would have its own governing board, would set compensation and classification standards for employment, and would establish a practice plan allowing for competitive salaries to recruit top flight physicians. The agreement also included the understanding that the Institute would embark on a path toward self-sustainability as a public service organization beyond the annual cost of maintaining the physical space, which the state would continue to support. In addition, the new agreement recognized the role of the Roswell Park Alliance Foundation, a 501(c)(3) organization established shortly after The Alliance, as an independent entity over which the Department of Health and legislature had no control, thereby removing any influence of Foundation funding on state appropriations. Until that time, the effect of philanthropic dollars raised by The Alliance and distributed to Roswell by the Foundation had been to reduce state funding to the Institute by an equal amount. Dr. Hohn accepted the position of President and CEO in large part because a new charter and terms for philanthropic funding were close to completion. Dr. Tomasi’s prediction that a strong community voice and support were essential for the Institute’s survival was validated and fulfilled by the central role The Alliance played in Albany. 

Yet, the victories in the state legislature were only part of what The Alliance accomplished in its first years. By the late 1990s, The Alliance had firmly established itself by envisioning and implementing an array of efforts that expanded local awareness of Buffalo’s national center for cancer research and patient care. With each new year, The Alliance introduced events that encouraged learning about and support for the Institute and its mission. Public support increased as research introduced promising new cancer treatments. Today, The Alliance is comprised of 62 volunteers who organize a wide range of events from the annual Ride for Roswell to the Empire State Ride to All Star Night to Bald for Bucks to Courage of Carly Club–a support network for children with cancer and their siblings–to a wig and prosthetics shop offering knowledgeable, caring consultation for comfort and confidence as patients live with and treat their cancer. A visit to The Alliance’s website reveals the breadth and depth of its work in education, awareness, and support through volunteer opportunities and the raising of millions of dollars each year. 

III.

After 30 years, Anne and Donna Gioia are passing the reigns of leadership to a new generation. Not surprisingly, The Alliance board, deep in talent and commitment, has one long-time member, Terry Bourgeois, who has accepted the call to serve as the new board chairperson. Just as the founding leaders were equipped with the right skills, vision, and commitment to launch, grow, and sustain a major enterprise, Terry Bourgeois brings all of the gifts needed to lead The Alliance as it faces new challenges in the years ahead. 

Terry’s upbringing illustrates why he is the right person at the right time to lead The Alliance. Growing up on a farm in North Dakota as one of seven equipped him with the people skills and work ethic that have contributed to his success throughout life. The Bourgeois family hosted refugees from Vietnam and every summer welcomed children from inner city Chicago. On any given night there could be as many as 19 family and guests at the dinner table. Terry talks about the trust that develops in committed relationships, which he learned in childhood then used in his career as an engineer first aboard a nuclear submarine and later at Praxair before retiring a few years ago. 

After his first Ride for Roswell, he asked himself a key question: While we are spending, as a society, billions of dollars on one nuclear submarine, what are we doing to find a cure for cancer? The answer, he concluded, was that we’re not doing enough. He has been an active member of The Alliance ever since. His work has included organizing five years ago the first Empire State Ride–a week-long bicycle tour from New York City to Buffalo that raises awareness and support, much in the manner of the Ride for Roswell but offering a different venue and challenge. Recently, The Alliance has added a Long Island ride in partnership with Catholic Health of Long Island in Rockville. CHLI is part of the Roswell Park Care Network and conducts clinical trials in collaboration with Roswell Park Comprehensive Cancer Center. A major goal of The Alliance for the immediate future, Terry says, is to expand the Center’s footprint of awareness and financial support and to partner with sister organizations faced with dramatic escalations in the cost of coordinating clinical trials. 

What was an institution in decline 30 years ago has made a 180 degree turn. It didn’t happen overnight, but it transformed one of the nation’s leading centers for cancer research and care. All it took were some heroes and champions–leaders like Drs. Tomasi and Hohn, key staff like Vice President Schwartz and Director Eller, and Dr. Tomasi’s Community Advisory Council. But the turnaround would not have happened without a final ingredient of success: the champions and heroes of The Roswell Park Alliance Community Group, from those first recruits who stepped forward even when they held deep apprehensions about a seemingly intractable disease to Anne and Donna Gioia carrying their grief for the fresh loss of their beloved daughter and niece. These two women have given Roswell Park and the surrounding community the very gifts of courage and love that Katherine gave to them all those years ago. Such gifts change human lives and communities when they are shared. 

When you attend an Alliance event or meet an Alliance board member, you encounter the spirit of generosity and love, indeed of joy, that emanated from a little girl over 30 years ago. Through her mother and aunt, that spirit captured the hearts of the first generation of Alliance members and volunteers and every generation since, not to mention thousands of Western New Yorkers who’ve attended events and raised money for this cherished institution.

Perhaps Dr. Hohn summed up the relationship of the Institute and The Alliance best as he reflected on its fortuitous beginning: “When Roswell was trying to save the life of a little girl, the little girl and her mother and aunt saved the life of Roswell.”