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1993
The Breast Cancer Coalition’s story truly begins more than thirty years ago. In 1993, 2.6 million signatures were collected nationwide and presented to President and First Lady Clinton requesting $2.6 billion to be spent by the year 2000 on breast cancer research. That same year, several members of a local cancer support group found they shared common ground as they faced breast cancer, and decided to branch off and form a new group specifically for those with the disease. They called themselves the Breast Cancer Coalition of Rochester.
1997
On July 2, 1997, following the merger with another group, the new group held its first meeting at the home of Sylvia Cappellino. Sylvia and Judythe Roth were joined by Harriet Susskind-Rosenblum, Maurine Johnson, Marcia Gittelman, Linda Gottwald, Shirley Falvo, Mary Jo D’Angelo, Carmella Richards, Janet Smith, Jackie Buck, and Kathy Chiavaroli – our founding members. These women, joined by others in the months to follow, established a mission for the Coalition that revolved around three goals: education, advocacy, and research. The name of the original group was kept, but its members were poised to blaze a new trail. By September, the women had a display table ready for the Highland Hospital Luncheon. They knew they were a force to be reckoned with when Dr. Susan Love, the guest speaker, mentioned their newly formed organization. The Coalition was officially incorporated on December 9, 1997. The first formal meeting of the Board of Directors was held in January 1998.
1998 – 1999
Membership kept growing in 1998, including, among other extraordinary women, Terri Schmitt, the Town Supervisor of Rush, and Kathy Clark, President of Clark Moving & Storage. In the fall of 1998, we published our first B-Line Newsletter, which eventually evolved into our current quarterly newsletter, Voices of the Ribbon. The Coalition also awarded its first research grant to Pia Challita-Eid, PhD, for $2,500.
Holly Anderson and Phyllis Connelly turned to the Coalition in 1999 after their own diagnoses, seeking support and answers. All four women filled a number of significant roles in the organization, including Chair of the Board. It was a time of tremendous growth, and Coalition members struggled with important decisions about how large the organization would become, and to refine its stated goals and mission. Terri and Kathy’s professional experience was invaluable in guiding the group through this period. Phyllis is known to this day as “The Queen Mum”.
It was in 1999 that the Coalition first advocated for the Patient Bill of Rights, the Genetic Information Nondiscrimination Act (GINA), and the Department of Defense’s Congressionally-Directed Breast Cancer Research Program, which we have continued to advocate for every year since.
2000 – 2001
The Coalition was rapidly outgrowing its meeting quarters located in the basement of Valley Manor on East Avenue, and members sought a permanent location. Sandra Maggio Monahan, who took a 3-month sabbatical from her job at American Express to lead the organization, used her expertise to further refine the Coalition’s goals and assist in finding office space. Under Sandra’s guidance and with the help of State Senator James Alesi, an office was located on Park Avenue and opened in June 2000. We also began advocating for the Breast & Cervical Cancer Screening Act (signed into law by President Bill Clinton in October 2000) and continue advocating for this program every year.
In 2001, the Coalition began offering “Evening Seminars” that focused on a variety of survivorship issues such as long-term effects of chemotherapy, reducing risk for recurrence, understanding endocrine therapy, and a multitude of other survivorship topics. These offerings were moved to the welcoming arms of Monroe Community College whose support and provision of space at no charge were invaluable in building our survivor community.
Advocates traveled to both Washington and Albany to learn about the issues surrounding breast cancer and have their voices heard by lawmakers. In 2001, the Coalition began selling pewter hearts from the Comfort Heart Initiative, started by Nova Scotia native Carol Ann Cole in memory of her mother. Proceeds from the comfort hearts provided seeding for our Breast Cancer Research Initiative. The Coalition also hosted its 1st Annual Lives Touched, Lives Celebrated event, where we honored and paid tribute to those who have been touched by a diagnosis of breast or gynecologic cancer.
With the Founders at the helm, Holly Anderson began her role as Executive Director two weeks after the World Trade Center crumbled on 9/11/01, and just as Terri was facing a new turn in her own breast cancer path.
2002
In 2002, with Phyllis Connelly now Chair of the Board, the pinch of the Coalition’s small office space grew tighter. In April of that year, Terri Schmitt and another beloved longtime member of the organization, Nancy Infantino, died of the disease. As members of the Coalition reeled in deep pain, their resolve to forge ahead grew stronger. Mother’s Day that year saw the initiation of a walk and run initially called Steppin’ Out with Heart & Sole before being named The Pink Ribbon Run and Family Fitness Walk the following year. That first year, runners and walkers braved the pouring rain at St. John Fisher College in high spirits to raise funds despite the dismal weather. Deborah Bonsignore became the Event Director and spearheaded the event for many years. Bix Debaise became our Race Director in 2004. Both served in these roles for several years before leadership was appointed to staff of the Coalition. In 2022, in recognition of our gynecologic cancer sisters, the event became known as The Pink & Teal Challenge.
Barb Pifer, the first office manager, was hired in the summer of 2002, and oversaw the move into the organization’s new location at 840 University Avenue. The Coalition opened the doors of its expanded office in September of that year, and remained there until 2014 when we moved to our current location at 1048 University Avenue. Under Holly’s direction, and with Joyce Wichie serving as Chair of the Board, support programs bloomed, including Brown Bag Fridays, an informal lunch group that continues to meet each week. With room to hold the evening seminars and other support programs, the Coalition became a hub of activity. Additionally, 2002 marked the start of our BC 101 program, thanks to the assistance of a small grant from the Junior League of Rochester. This program (now also including GYN 101, BC 201 and GYN 201) has become a hallmark of the Coalition.
Capitalizing on the momentum, members launched the Rare Chair Affair in 2002. Artists donated chairs, stools, benches, anything anyone could sit on, which they had decorated in their own personal styles for an upcoming auction. The wide variety of items created a dazzling display and demonstrated the commitment of local artists to those living in the aftermath of breast cancer. Over the years, this lively event transformed into the ARTrageous Affair, and then to ACTober – all with the goal of raising funds in support of the Coalition’s mission.
The founding members had prioritized the funding of breast cancer research with the goal of keeping funds raised in our community right here in our own region. The first request for proposals for our Breast Cancer Research Initiative was circulated in 2002. A Research Advisory Board consisting of both scientists and breast cancer survivors was formed whose task it was to review proposals and to make a recommendation of the most meritorious project to the Board of Directors. The Coalition awarded its first grant from the initiative of $25,000 to Mesut Muyam, Ph.D., of the University of Rochester.
Later in 2002, Harriet Susskind-Rosenblum succumbed to her breast cancer, as did Cindy Dertinger, also known as “the Energizer Bunny.” Harriet was a college professor and poet, and the many beautiful words she left behind have been a source of comfort and inspiration to many. In her honor, we have presented the Harriet Susskind-Rosenblum Advocate’s Spirit Award each year at our ACTober event since 2004. Cindy’s family and her employer, M&T Bank, were so moved by her experience that they worked with us to present the Cindy Dertinger Advanced Breast Cancer Seminar: Tools for the Journey in her honor. The first of these seminars was held in 2004. Its inception was a milestone for the community, as this was the first offering geared toward women (or men) living with advanced breast cancer, as well as family, friends, and care providers. The Advanced Breast Cancer Seminar continues to be offered annually.
2003
In the spring of 2003, the Bosom Buddies Cookbook hit the stands. Our friend Jane Gordon, herself a breast cancer survivor, took her great idea and ran with it. With funding for the project underwritten by her parents, Audrey and Burt Gordon, and support from fantastic friends Randi Winterman and Pam Bernstein, the cookbook raised over $50,000 for the new Resource Center.
The first annual Terri Schmitt Legislative Reception was held in the summer of 2003. Legislators from the local, state, and federal levels were invited to meet in a casual setting with survivors. It provided a unique opportunity to put a human face behind the disease for those in a position to consider laws that deal with the concerns of those facing the diagnosis, and for those in our survivor community to meet their lawmakers. The participation of Terri’s family has added deep meaning to this event, which has taken place on an annual basis since, and the heartfelt words spoken by one of her friends or family members during these evenings remind everyone in the room of the reasons we hold this yearly gathering.
2003 also marked the Coalition’s first golf tournament, called “Tee’d Off at Breast Cancer,” co-chaired by the amazing team of Lee Cordero and Sean Patton who continue to co-chair the event to this day. It is now a regular part of our summer schedule, and Lee and Sean have become treasured friends of the organization.
2004
In 2004, a Program Coordinator was hired to manage the expanding offerings and increasing numbers of those taking advantage of them. Brown Bag Lunches, Evening Seminars, and a Metastatic Breast Cancer support group known as Common Ground were central to our daily operations.
2005
Our advocacy efforts intensified in 2005 when the 48-Hour Neighbor Notification Law came before the Monroe County Legislature. It had been considered in years past and defeated, but this time, things were different. Maggie Brooks, then County Executive, changed the tone of the conversation when she announced her support for the bill, which required that lawn care companies/individual homeowners planning to spray for weed and pest control notify neighbors with abutting properties in advance. Mindful of the environmental link to cancer, members of the Advocacy Committee called out for the participation of those within the organization and from the community at large, asking all to go before the legislature and speak in support of the bill. The response was overwhelming, and the bill passed with County Executive Maggie Brooks signing this law in January 2006. It was a landmark success for our advocacy work.
2005 also saw the initiation of several new programs, including Gentle Yoga, the Sister Sak Project, and Voices and Vision. These have since evolved. Sister Sak grew to become the PALS Project in 2008, connecting those who are newly diagnosed with mentors who have walked the same road. Voices and Vision, a writing program, is now facilitated by a revolving list of community educators. Gentle Yoga participants have learned to respond immediately to messages announcing new sessions of this popular program, as classes fill quickly.
It was also in 2005 that we first began Lives Touched, Lives Changed, a calendar project featuring survivor portraits. The photographs were taken by Jacquie Freitas, a local photographer. The project was so well received that we decided to continue with the portraits on an annual basis. Each year, six to seven survivors are photographed, now by photographer Lisa Gresens. The survivors also write their personal stories, which are included with their photos. Lives Touched, Lives Changed has become an important and poignant way for survivors to share their experiences of living with a cancer diagnosis. With over 100 portraits done so far, they line the walls of our large gathering room at the Coalition for all to see. Many of these portraits are also featured on our website.
2006 – 2008
In the spring of 2006, the first networking group for young breast cancer survivors began meeting at the Coalition. The group was facilitated by psychologist, Dr. Miriam Iker, and a young survivor, Amy Weetman. This group morphed into the quarterly Young Survivor Gatherings, which were initiated in 2008. We also began running a monthly Book Club in 2008.
2009 – 2010
The Coalition’s Advisory Council was established in the Summer of 2009. In October 2010, we established the Annual Laurie Pask Heart & Hands Award, which is named in honor of Laurie Pask – a dear, early member of our “Common Ground” group. Every year, one care provider from our area receives this award whose work best exemplifies the balance of kindness, compassion, respect, and science that Laurie demonstrated while providing care to her own patients.
2011 – 2012
The full complement of the Coalition’s Healing Arts Initiative began in January of 2011, incorporating a revolving series of classes in such health promoting activities as Qi Gong, Tai Chi, Fluid Motion, and the already popular Gentle Yoga throughout the year. Those seeking healing from the physical and mental trauma of a breast cancer diagnosis gather with instructors who help guide the way in a gentle, life-affirming manner. All of our programs continue to be offered free of charge.
In the winter of 2011-2012, after proposing the addition of a mammography unit to the Anthony Jordan Health Center, the Coalition made a significant financial contribution toward the installation of this unit located in a city neighborhood where access to screening is limited.
2013
In August of 2013, Karen Miltner formed the Lymphedema Awareness Network (LANROC) and hosted the group at the Coalition. When she stepped aside, the Coalition realized it was very important to keep this opportunity available to those living with lymphedema. Thus, the Coalition began offering the professionally-facilitated Lymphedema Discussion Group on a monthly basis.
2014
In 2014, after holding a series of focus groups, we identified a strong need for support among gynecologic cancer survivors. The Coalition opened its support programs to those facing this group of cancers. They have become cherished members of our survivor community. It was also in 2014 when Coalition advocates were instrumental in the passage of New York’s Compassionate Care Act, the medical marijuana legislation. This law allowed cancer survivors access to a botanical remedy to alleviate the effects of their disease and/or treatment.
Also in 2014, it became clear that a location with off-street parking would benefit our survivor community, and we moved two blocks down the road to our current home at 1048 University Avenue. We hosted an Open House in January 2015 where we welcomed the survivor community to our new home.
2015
Funded by the New York State Pollution Prevention Institute at RIT, we participated in the “Chemical Education for Cancer Prevention” project, whereby we went into nail salons throughout Monroe County to provide information about toxic chemicals (formaldehyde, dibutyl phthalate, toluene) to salon workers, most of whom are of childbearing age.
Also in 2015, we conducted a series of roundtable discussions hosted by eight of our NYS Senators. We welcomed survivors from a broad range of smaller cities and rural communities across Central and Western New York, all the way down to the state line, who shared their experiences of living in the aftermath of their breast cancer diagnoses with limited support and education services. Following these roundtable discussions, the Senators formed a delegation that committed to provide the necessary funds that allowed us to extend our reach into the nine-county region surrounding Monroe County in 2016.
2017
We began committing more time to advocating for the passage of the Metastatic Breast Cancer Access to Care Act. We also launched the groundbreaking new program Surviving and Thriving on Aromatase Inhibitors, which supports survivors diagnosed with estrogen-positive cancer who have been prescribed an AI as part of their follow-up care. The Coalition offers the program four times a year.
2018
In March 2018, we launched the Coalition Café, a monthly breakfast meeting for those interested in learning more about our programs and services.
In October 2018, we received an extraordinary honor and were selected as the recipient of the 2018 ETHIE Award by the Rochester Area Business Ethics Foundation (now Elevate Rochester). We are proud of our high ethical standards and strive to build on that strong foundation in all we do.
2019
We officially launched our beautiful new logo.
2020
We all witnessed the world forever changed in 2020 as the COVID-19 pandemic became our reality. Through unknown and very challenging times, the Coalition remained dedicated to supporting our community. Staff quickly pivoted programs and services to virtual platforms. They were inventive, flexible, and compassionate in ensuring that survivors would have access to our programs without interruption.
Moving our programs to a virtual platform allowed us to reach a greater number of people. We expanded our service area to 27 counties in Central and Western New York and continue to serve this region today.
2022
During these tough years, we were able to continue impacting change. In January of 2022, Holly Anderson (Executive Director from 2001 – 2024) established the Emerging Leaders Program. Her vision was to grow the number of young breast cancer survivor-advocates knowledgeable in the areas of advocacy and research. Holly believed that engaging and training young survivors was and remains the most important step in ensuring the future of the Breast Cancer Coalition. In Holly’s eyes, the energy, anger, frustration, and fear – so prevalent in the young survivor community – are powerful motivators for commitment and change.
The Coalition remains committed to funding important and groundbreaking research as well. July 2022 marked a huge milestone for our Research Initiative when we surpassed $1 million dollars in the provision of funding to regional researchers since the program’s inception. These seed grants fund innovative projects with the potential to yield significant medical breakthroughs relating to breast cancer.
2023
In early 2023, we started our Sisters of Color Discussion Group, which meets twice a month. This group began after conducting focus groups to assess for the greatest needs of women of color who are/have been diagnosed with breast and/or gynecologic cancer. That same year, we also started the Gynecologic Cancer Discussion Group specifically for individuals living with GYN cancers, which meets twice a month. 2023 also marked 25 years of service to our community. This anniversary is very important to us, and we continue to be excited about building on such a strong foundation.
2024
In March 2024, Christina Thompson, the Coalition’s former Associate Director, began her new role as Executive Director. Christina has been with the Coalition since January 2021 and has always exemplified empathic leadership, a capacity for strong community building, and a steadfast determination to advocate for breast and gynecologic cancer survivors.
Christina has already contributed significantly to the growth of the Coalition, particularly in expanding our programming offered throughout our 27-county region. Additionally, she has lent her guidance and insight to many of our initiatives, such as Chairing our Advocacy Committee and assisting in major ways with our Research Initiative. Her strategic vision, along with her personal lived experiences and deep desire to promote equity, diversity, and inclusion at the Coalition will ensure the organization’s continued ability to serve survivors of breast and gynecologic cancers from diagnosis through survivorship.
We are so proud to realize how far we have come, and humbled to see how far we have yet to go. Many have worked hard to bring us the present moment. As with raising children, it takes a village to build an organization. A countless number of determined, imaginative, kind souls have left their marks on the Coalition. They are in our minds and hearts as we move toward the day when breast cancer has become nothing but a bad memory. In the words of Sylvia Cappellino, “Then, and only then, will we close our doors and go home.”
