Summer 2020 • Volume 21, Number 3 Serving those with breast and gynecologic cancers

Two of the many survivors impacted by studies conducted in our region by the recipients of our 2020 research grants, Kathy Simpson (left) was diagnosed with triple negative breast cancer in 2013, while Nancy Gramkee-Cuer (right) has been living with metastatic breast cancer since 2017. For more information on our Research Initiative, see page 14. OUR EXECUTIVE DIRECTOR

Just as cancer does not discriminate, an echo of performative activism. We the Breast Cancer Coalition recognizes pledge to listen more and talk less, the importance of a culture that to learn more and act accordingly, strives for diversity. We honor and to stand with these patients in individual differences whether color, demanding a more just world with race, religion, political viewpoints, better outcomes. socioeconomic status, physical abilities, gender, gender identity, We join the Greater Rochester Health and/or gender expression. We want Foundation and others in formally everyone who comes to the Coalition pledging our support for the Greater Rochester Black Agenda Group in their Holly Anderson for services to feel safe and accepted. May 19, 2020 DECLARATION: RACISM But everyone is not safe in our IS A PUBLIC HEALTH CRISIS. It's hard to watch what is happening community. Everyone is not accepted. in our city and around the country And we can no longer stay silent. and stand by silently as we try to find Black lives DO matter. Racism has long the right words to say in response to been a factor in the disparities we see what we are witnessing. And we can't in cancer diagnosis and treatment. We stand aside and say nothing hoping have long known that the mortality In this Issue... someone else will say it better. Racism rate for the Black, Brown, Indigenous, A Personal Journey ...... 3 is present in our community. Racism People of Color, and LGBTQ+ Advocacy Updates ...... 4 is a public health crisis and represents communities is measurably higher Living with Advanced Breast Cancer . . 6 a longstanding paradigm of systemic than for White women. We have racism that cannot be ignored. We long known that racism destabilizes HER2: What's New? ...... 7 grieve for the family of George Floyd. public health and disproportionately Living with Gynecologic Cancer . . . 9 We grieve for the families of Breonna impacts those with cancer. These Program Offerings ...... 10 Taylor, Ahmaud Arbery, Freddie Gray, populations are more likely to be Program Update ...... 12 Laquan McDonald, Philando Castile, diagnosed at a later stage and less Healthy You ...... 13 likely to be offered clinical trials. "We must always take They are least likely to be referred Research Update ...... 14 for genetic counseling, least likely to Think Before You Pink ...... 15 sides. Neutrality helps complete their treatment, and least Breast Implant Recall Update . . . .15 the oppressor, never the likely to be referred for palliative care. Pink Ribbon Walk & Run Update . . 16 These have been the patients with the Regional News ...... 18 victim. Silence encourages worst breast cancer outcomes. These the tormentor, never the inequities are unendurable. Though Friends Remembered ...... 23 we have done much within our Development Udpate ...... 24 tormented." mission to impact these outcomes, we A Prayer ...... 24 – Elie Wiesel can and MUST do more. Volunteer Spotlight ...... 25 O'Shae Terry, Michael Brown, Trayvon Although COVID-19 has forced us to PALS Update ...... 25 Martin, Tamir Rice, Tony McDade, temporarily close our doors to in- Outreach Update ...... 26 and the countless other Black people, person programs, our hearts remain Fundraising Friends ...... 26 named and unnamed, whose lives open to all affected by breast and Thank You Donors ...... 29 have been taken by the hands of gynecologic cancers, as well as their Wish List ...... 31 those who have sworn to serve family members and other loved ones. and protect. Our grief has turned As we strive to live the inclusivity Board of Directors & Staff . . . . .31 to resolve; we must recognize ways of our mission, we will also strive to Cover photos: each year the Coalition we have been complicit and commit step off the sidelines of racism and highlights a handful of survivors through to becoming increasingly vigilant in professional photographs and sharing employ resources to address the real, their cancer journey in writing. Thank you seeking ways to eliminate racism, unmet needs that are occurring. We to photographers Jacque Freitas and Lisa particularly in healthcare. will not allow our words to become Gressins for donating their time and talent.

2 • Summer 2020 BreastCancerCoalition.org A PERSONAL JOURNEY: ALEXA’ LADUKE By Pat Battaglia

EVERY DAY

Two weeks after her fortieth birthday, Alexa’ LaDuke went for a mammogram, but not for the first time. A mammogram at age thirty- eight had been a precautionary measure for her after five years of infertility treatments. Her first breast imaging experience raised no alarms, and the time that followed passed quickly for this busy nurse and mother of two: five-year-old Kinsley, her daughter, and her three-year- old son, Kaiden. When her landmark birthday arrived, Alexa’ scheduled what was intended to be the first of many screening mammograms. But an area of concern was discovered in a place neither Alexa’ nor her doctors could palpate, and her morning appointment became a full day of additional screening procedures, culminating in a needle biopsy. Alexa' and her children Kaiden (left) and Kinsley (right). Friday, July 13th, 2018 is etched in Alexa’s memory. She remembers decisions to make in the next few days Alexa’ received a visit from two sitting on her deck looking at the than she ever thought possible. nursing friends, who noticed her blue sky, thinking, “Today is too color changing. Her temperature Acting quickly, Alexa’ consulted beautiful for anyone to learn they began to rise. Gerry called Alexa’s a number of breast surgeons and have cancer. It just can’t be.” Shortly cousins, Sue and Kurt, who came to plastic surgeons before selecting her afterward, her phone rang, bringing stay with the children. Mother and medical team. Three weeks after her the unwelcome news; she did indeed daughter headed to the emergency diagnosis, she underwent a bilateral have breast cancer. While attempting department, where Alexa’ was mastectomy - removal of both breasts to speak with the radiologist who admitted to the hospital. Gerry again - with reconstructive surgery using had performed her biopsy, Alexa’ remained in her daughter’s room, tissue harvested from her back. frantically took notes and strove this time for five days, while Alexa’ Alexa’s intended three-day hospital to keep her voice steady so as not received intravenous antibiotics stay was extended to six days to to alarm her children. Her mother, for an infection, an uncommon ensure her pain was controlled and Gerry Bergstrom, was with her. In a post-operative complication. The her blood work was in the normal five-minute conversation that turned antibiotics had the intended effect range. Her mother remained by her her family’s world upside down, the and cleared the infection completely. side the entire time. radiologist advised Alexa’ there would When Alexa’s surgical pathology be more medical appointments and Three days after she arrived home, Continued on page 22.

BreastCancerCoalition.org Summer 2020 • 3 ADVOCACY CHAIR UPDATE By Kathy Guglielmi

Kathy Guglielmi, Coalition Board Member, Advocacy Committee Chair

In March 2020, New York State, along with most of the rest We are continuing our advocacy education by virtually of the country and world went on “pause”. Nonessential attending the annual Advocacy Summit sponsored by businesses closed and many of us worked, learned, and the National Breast Cancer Coalition. The Summit was sheltered at home. But cancer does not stop because to have taken place in Washington, D.C. in early May. of a pandemic and neither does cancer advocacy. We As of this writing, sessions have not begun, but planned advocates had to find new ways to continue our work. topics include an update on the Artemis Project, which is Like many others, we transitioned our monthly meetings research focused on the prevention of breast cancer and to Zoom. The meeting format seems to allow for greater the prevention of metastasis; advocacy in response to attendance – no commute time, no other commitments, COVID-19; breast cancer subtypes with a focus on invasive and a desire to be with our fellow advocates, albeit lobular disease; advocacy in a digital age; and many others. virtually. The Summit usually culminates in a day on Capitol Hill meeting with our elected officials. This year will entail 2020 is an election year, and we wanted to meet with virtual meetings with our representatives and their staffs. candidates for office. Again, we turned to Zoom. Our first Zoom candidate meeting was with Nate McMurray, Yes, things are different in a virtual world, but much candidate in the June 23 special election to fill the vacant remains the same. With the use of technology, the seat in New York’s 27th Congressional District. The meeting Advocacy Committee continues to meet our mission to allowed the committee an opportunity to introduce the advocate for and lend support to breast cancer relevant Coalition to Mr. McMurray and to hear his thoughts on bills and public policy. health care and other relevant topics. KNOW YOUR REPRESENTATIVES: New York State Senate New York State Assembly Senator George Borrello, NYS 57th Senate District Assemblyman Harry Bronson, NYS Assembly District 138 Senator Rich Funke, NYS 55th Senate District Assemblywoman Marjorie Byrnes, NYS Assembly District 133 Senator Patrick Gallivan, NYS 59th Senate District Assemblyman David DiPietro, NYS Assembly District 147 Senator Pamela Helming, NYS 54th Senate District Assemblyman David Gantt, NYS Assembly District 137 Senator Thomas O'Mara, NYS 58th Senate District Assemblyman Stephen Hawley, NYS Assembly District 139 Senator Robert Ortt, NYS 62nd Senate District Assemblyman Mark Johns, NYS Assembly District 135 Senator Michael Ranzenhofer, NYS 61st Senate Assemblyman Brian Kolb, NYS Assembly District 131 District Assemblyman Peter Lawrence, NYS Assembly District 134 Senator Joseph Robach, NYS 56th Senate District Assemblyman Brian Manktelow, NYS Assembly District 130 NYS Assembly District 136, vacant The Advocacy Chair Update on page 4 from our Winter 2020 issue should have included the name of Assemblyman DiPietro on the list of local assembly members support the work we do for our regional survivor community. We apologize for inadvertently omitting his name.

4 • Summer 2020 BreastCancerCoalition.org ADVOCACY IN ACTION

How far have Coalition advocates come and what challenges do we still face? By Phyllis Connelly Phyllis Connelly

Although the Coalition is open, access to the facility is We then spend a day on Capitol Hill meeting with our currently limited. Programs, meetings, and activities are area Representatives and Senators or staff, sharing being conducted virtually. Staff members are working our perspective as informed survivors on public policy from home. Our eagerly awaited May trek to the Annual priorities. Advocate Leadership Summit in Washington, D.C., offered by the National Breast Cancer Coalition (NBCC), is Since 1992, a top priority for us has been securing postponed – thus giving me time to absorb the impact and continued funding for the Department of Defense Breast reflect. Cancer Research Program, or the DOD BCRP. (The reasons for DOD funding of breast cancer research is a story for Much progress has been made in the understanding and another day.) treatment of breast cancer. However, much more needs to be known to prevent anyone dying of the disease. Our second priority is usually a pending bill. Presently, it is H.R.2178, also known as the Metastatic Breast Cancer Advocates from the Breast Cancer Coalition, an Access to Care Act, which would waive all waiting periods independent, unaffiliated organization, have attended for Medicare and Social Security Disability Insurance the NBCC summits for twenty-three years. We listen to coverage for individuals with metastatic breast cancer. and converse with visionaries and leaders in the fields of science, research, medicine, journalism, public policy, Most recently, a high public policy priority has been pharmaceuticals and ethics. guaranteed access to quality care for all. Here is a mere sprinkling of sessions I’ve attended: Some notable successes in this area have been: • Herceptin – treating patients whose tumors overexpress • The passage of The Affordable Care Act. the HER2 Protein • The Genetic Non-Discrimination in Health Insurance & • Genetic Testing: Does it help to know? The risks involved Employment Act • The Role of the FDA • The New York State Breast and Cervical Cancer • The Environment & Breast Cancer: What are the links? Treatment Program • Aromatase Inhibiters: Evidence and Implications There are still many challenges ahead. Securing continued • Clinical Trials and the Drug Approval Process funding for research is an ongoing commitment. Nurturing • Evidence Based Complimentary & Alternative Medicine our very good relationships with elected representatives at • Nanotechnology in Imaging & Treatment all levels is also vital. Ensuring past achievements remain • Stem Cell Research intact is always important, as is staying patient while • Estrogen Exposure Throughout Life awaiting results of trials, tests, and FDA approval of new • Tumor Dormancy and Recurrence drugs and treatments. • How Can We Understand and Stop Metastisis • Immunotherapy – What’s Happening Be assured, we advocates will remain diligent, persistent, • Ethical Issues Surrounding Cancer Treatments and vocal in reaching our goal: to see the day when no one • Reading Beyond the Hype in News Media and Scientific dies of breast cancer. Literature • Informed Consent in Clinical Research Do you want to join our efforts? • 10 years Into the Artemis Project Contact us today @ (585)473-8177 or (www.stopbreastcancer.org) [email protected] to learn more about our Advocacy Committee. BreastCancerCoalition.org Summer 2020 • 5 COMMON GROUND Living with Advanced Breast Cancer Sharing Stories, Building Community By Pat Battaglia

I love my work at the Coalition. That includes retelling the stories survivors have shared with me for inclusion in this newsletter. There’s a common response when I approach someone about sharing their story this way: “Me? My story isn’t very interesting.” By the time the words appear in print to be acknowledged by family, friends, and countless others, a realization has taken place; everyone’s story is interesting. Everyone’s story is unique and valuable. And yet, I find myself facing the same quandary in telling my own story. Who will find this interesting? What value does it have for others? I will never know if I don’t share it.

My walk with breast cancer began Pat and her daughter, Karen. on a sunny day in early May, 2004. The morning was much like any other at that time of year, bright with the promise of spring. By evening the skies had turned gray, the wind chilly, and I was left with the sensation of dangling over an abyss. In the interim, a breast lump I had been certain was a benign growth similar to those my sisters had experienced was shown to at the Coalition, accepted a seat found others whose stories were be cancerous. Life had taken a sudden on the Board of Directors for two similar; a community that helped detour. years, and eventually joined the staff. guide her through. My granddaughter By the time 2017 dawned, my two was born healthy and strong, and One week later, I walked into the daughters had moved to California, continues to thrive. Coalition. By the time I left, I felt my one was wed, a grandson born, and feet had touched solid ground again. we celebrated the announcement of a The years turned and 2019 began Ahead of me was rough terrain, but second grandchild – a granddaughter quietly enough. The pace of life was it was ground others had walked and - to be born that summer. Life was once again easy and familiar. It felt like they became my guides. Surgeries and good; it still is. But another major an overabundance of caution to have chemotherapy consumed the better detour was just ahead. a lump that appeared on my clavicle part of the year that followed, and examined by a doctor. But with my with the support of family, friends, My daughter, eleven weeks into history, it was the right thing to do. medical providers, and my trusted her pregnancy, was diagnosed with Biopsies and scans were ordered, guides, I found my way through. breast cancer. Once again, I felt that which found that my breast cancer abyss open. I saw her wheeled into had spread to a number of sites within The years since have been punctuated surgery for breast cancer. I witnessed my body, including bones and thoracic by joy and growth: graduations, her and her unborn daughter endure lymph nodes. Once again, I was, and weddings, and children flying the nest chemotherapy together. Yet, ever the still am, a cancer patient. one by one. I gratefully volunteered intelligent self-advocate, my daughter Continued on page 23.

6 • Summer 2020 BreastCancerCoalition.org HER2: What’s New? An Interview with Carla Falkson, M.B.Ch.B., M.Med., M.D. By Pat Battaglia

Dr. Carla Falkson is a medical oncologist at the University of Rochester who came to our region from the University of Alabama at Birmingham. A practitioner whose breast cancer patients represent all facets of the disease, Dr. Falkson is originally from Pretoria, South Africa. After she graciously consented to an interview for our newsletter, our intended face-to-face conversation became a zoom meeting due to COVID-19. Undaunted, we were able to speak in depth about a topic of interest to Dr. Falkson: HER2 positive breast cancer. This is a subtype of the disease in which the cancer cells have too much of a protein called human epidermal growth factor receptor 2 (or HER2). Another area of interest for Dr. Falkson is translational research or, as she termed it, “...bench to bedside medicine.” She participates in a number of clinical trials and applies her knowledge to treat breast cancer patients across the wide spectrum of the disease. Carla Falkson, M.B.Ch.B., M.Med., M.D.

Thank you for sharing your What does HER2 positive breast One of the things we’re looking at is knowledge about HER2 positive cancer means for people who giving patients a drug called TDM-1. breast cancer with our community. receive this diagnosis? Its other name is Kadcyla. They’ve What work have you done regarding Dr. Falkson: HER2 is one cell marker taken this trastuzumab molecule this disease subtype? that we test for. The other two are and attached the chemotherapy Dr. Falkson: I was part of the group the hormone receptors estrogen and drug emtansine to it. The idea is that that found the HER2 protein, which progesterone. Patients can have hor- the chemotherapy delivers a bigger is overexpressed in about a quarter mone positive, HER2 positive disease payload directly to the targeted cells. of breast cancers. It was very exciting or they can have hormone negative, It’s been extensively tested in patients when a monoclonal antibody called HER2 positive disease. In all HER2 with stage four disease and we have Herceptin, or trastuzumab, was de- positive disease, we look at the size some information about using it in veloped because it targets the HER2 of the tumor and whether it’s spread earlier stage breast cancer. At this protein exclusively. An antibody is like to lymph nodes. In many cases, we time, the breast cancer medical com- a little targeted missile; it goes for a can start off by giving chemotherapy munity feels it’s safe to give that as specific protein and causes cells that before surgery and determine if the an alternative to chemotherapy plus express it to die. tumor is shrinking. That would be trastuzumab for patients with early called neoadjuvant chemotherapy. stage HER2 positive breast cancer. I was involved in a trial run by the TDM-1 has advantages in that it causes Breast Cancer Research International If the tumor’s already been removed white blood cell suppression, so it Group, or BCIRG, a translational re- surgically, we look at the pathology doesn’t affect the immune system search organization. (BCIRG)006 was information and, based on that, often the way chemotherapy does. A lot of one of the pivotal trials that changed recommend chemotherapy along with patients do quite well and don’t need the standard of practice for the world trastuzumab. For those that are hor- any kind of anti-nausea medications. in treating HER2 expressing breast mone receptor positive, we recommend It’s not universal that people lose cancer. The data were presented back estrogen-blocking therapies as well. their hair. in 2005. We found that adding trastu- zumab to chemotherapy significantly Currently, with the COVID-19 situation, It might be a silver lining to what improved the response rate for pa- we’re also looking to see if we can we’re going through now; we are tients with early stage HER2 positive postpone surgeries and start treat- forced to look for other treatments breast cancer. Since then, I have been ment with systemic therapies until that may have less toxicity for our and am still involved in many other this pandemic is over. We try to keep patients and are still as effective. trials targeting HER2. people out of the hospital, basically. Continued on next page. BreastCancerCoalition.org Summer 2020 • 7 Dr. Falkson, continued

How does HER2 positive breast and there are oral kinase inhibitors For some of my patients with early cancer compare to other forms that target some of those HER2 recep- stage HER2 positive disease, once of the disease? tors as well. The most common one they’ve finished their chemotherapy Dr. Falkson: Before we had HER2 is known as lapatinib [Tykerb] and and trastuzumab, I’ve continued to targeted therapies, this was considered there’s another one called neratinib give them a year of neratinib with to be an aggressive disease that was [Nerlynx]. hormone therapies to help prevent a recurrence in the future. not easily treatable. But since we’ve More recently, a drug called Enhertu developed these targeted therapies, has gotten such good results, it was Pertuzumab, which I mentioned previ- it’s become very treatable. also recently approved in stage four ously, has been used widely in early In early stage disease – that’s stages disease. Like TDM-1, it’s trastuzumab stage and metastatic disease. It binds one, two, and three – a large percent- with a chemotherapy molecule at- to a different area of the HER2 protein age of those patients can be cured by tached. The technical name is fam- than trastuzumab, and the two drugs means of combination therapy: tar- trastuzumab deruxtecan. are often given in combination. geted HER2 therapy, chemotherapy, The most exciting new agent is called When deciding which therapies to use and surgery plus or minus radiation tucatinib [Tukysa]. In a study called for any particular patient, it’s always therapy. However, if the cancer has the HER2CLIMB trial, metastatic a matter of risk versus benefit. You spread outside the breast and regional HER2 positive breast cancer patients want to prevent the cancer from com- lymph nodes – in other words, if it’s who were previously treated with ing back, but you have to match the spread anywhere else in the body trastuzumab, pertuzumab (Perjeta) cure to the disease. – that’s what we call stage four or and T-DM1 received trastuzumab metastatic breast cancer. Metastatic and a chemotherapy drug called What do you feel is important HER2 positive breast cancer is not a capecitabine [Xeloda] plus or minus for those recently diagnosed curable condition, but it is treatable tucatinib. They found significant with HER2 positive breast cancer to with targeted therapies, and we’re improvement in the three-drug know? seeing a significant improvement in combination. This study is being taken Dr. Falkson: Do your homework; don’t median survival. This is very, very further by a group called Seattle sit back and wait for weeks or months encouraging. We have treatments Genetics. after your diagnosis, but certainly do to keep the disease in control while your homework. I usually recommend extending patients’ quality of life and I met with another pharmaceutical that, if patients can, they should go to duration of life. company recently to talk about a new a center that specializes in breast can- drug in the pipeline. I think we’re cer and follow the recommendations I’ve read recent reports about going to see more of these targeted discoveries in the treatment of of their oncologist. Ask if there are therapies coming out and being metastatic HER2 positive disease. any clinical trials going on because, useful. Are there new treatments on the until we get to a one hundred percent cure rate with zero percent side ef- horizon? Do these or other recent devel- fects, there are always opportunities New drugs are being de- opments have implications for Dr. Falkson: to do research and improve what veloped all the time. This is very excit- those with early stage HER2 positive we’re doing. At the moment, ninety ing because new treatment options breast cancer? percent of patients with early stage are being brought forward. What Dr. Falkson: Traditionally, the way breast cancer will never have their dis- happens in HER2 positive metastatic we’ve developed trials is to see if ease return, but there are still some disease is that you start with one kind something works well in metastatic side effects. of targeted therapy or combination disease. If it does, then we think, of treatments and the cancer cells “Wouldn’t this work even better if we I think it’s important to note that, as eventually become resistant. Then gave it to patients when they have we discussed earlier, HER2 positive you have to find new options. That’s early stage disease?” Certainly in the breast cancer used to be difficult to why it’s important, if you can’t eradi- future we will be looking at tucatinib treat but we now have very good cate the cancer completely, to have a in the neoadjuvant situation to see if treatments for it. So there’s a lot of pipeline of other medications that can it has a benefit for early stage breast hope. There are lots of reasons for be used in place of the ones that have cancer. There has been some indica- optimism. stopped working. tion that neratinib benefits certain patients that have hormone receptor Monoclonal antibodies such as positive, HER2 positive early stage trastuzumab are given intravenously, *** disease.

8 • Summer 2020 BreastCancerCoalition.org Living with Gynecologic Cancer

Survivor’s Story: Teresa Beach By Pat Battaglia

Pictured here: Billy and Teresa Beach

Below: Teresa and grandson, Carson

COVID19 may have limited our face-to-face interactions, but it will never dim the bright lights of those in our survivor community. Teresa Beach and I have been able to correspond by email, and here is her story.

When confusing symptoms emerged a surgical procedure called a in the fall of 2013, Teresa Beach took cytoreduction, more commonly notice but wasn’t overly concerned. known as debulking surgery, which is It wasn’t until her annual OBGYN visit intended to remove as much of the in December that she mentioned her mass as possible. Teresa underwent urinary difficulties. At that visit, her a total hysterectomy, removal of sense of urgency and the sensation both ovaries and adjacent areas, that she could never void completely and had ports placed for delivering were attributed to uterine fibroids. chemotherapy infusions. Her post- But on New Year’s Eve, Teresa began surgical pathology report brought a experiencing digestive issues. “I felt definitive diagnosis: papillary serous had the desired effect; her post- full after small amounts of food,” she ovarian cancer. chemotherapy scans showed no recalled. Gastric trouble became a evidence of disease. She then began persistent, unwelcome companion. After one month of healing, Teresa a series of maintenance medications “By February, I was barely able to eat began chemotherapy. Intravenous that held the cancer at bay for years, any solid food,” she recalled. chemo drugs were administered until a recent recurrence of her through a central port and she disease meant that she was treated Multiple rounds of medical received intraperitoneal (or IP) chemo once again with chemotherapy. A evaluations ensued. Teresa was seen through an abdominal port. In IP new maintenance medication causes by her primary care physician, her chemotherapy, which is sometimes some side effects, but Teresa’s OBGYN, a gastroenterologist, and the used in gynecologic cancer treatment, post-treatment perspective serves emergency department of her local chemo drugs are infused into the her well. “I am able to function on hospital. A colonoscopy that was abdominal cavity, where they can this medication,” she gratefully ordered became too uncomfortable work directly at the site of the acknowledged. to continue, so Teresa was referred disease. for a CT scan. This detected Not only has Teresa seen her twins an ovarian mass, and her next It was a challenging regimen for through high school and onward, her consultation was with a gynecologic Teresa. “I had twin tenth graders at graciousness and gratitude have been oncologist: a physician who specializes the time and had plenty of parenting reinforced and strengthened along in diagnosing and treating cancers left to do,” she shared. “I was hopeful the way. “Absolutely everyone I knew that occur on female reproductive that I would see them through high was there for me,” she says. “Friends organs. school.” I didn’t know I had stepped up and

On March 13, 2013, Teresa underwent Thankfully, Teresa’s treatment Continued on page 23.

BreastCancerCoalition.org Summer 2020 • 9 HEALING GIVE &GET LEARN ARTS SUPPORT

BREAST OR GYN CANCER In this peer mentoring 101 program, individual breast These are one-to-one sessions to assist newly diagnosed and gynecologic cancer individuals manage the complex tasks and emotions of survivors reach out to those a breast or gynecologic cancer diagnosis. We empower who are more recently them to be self-advocates as they proceed through diagnosed, providing the treatment, recovery, and survivorship. Our professional reassurance of one-to- facilitators provide a safe, comfortable atmosphere one contact with someone where information can be absorbed and assimilated while who’s “been there,” helping them connect with needed the individual formulates a personal strategy for making resources, and instilling confidence during a difficult time. informed decisions. Also valuable for a gynecologic or breast cancer survivor at any stage of their journey. Call today to learn how to join the program and be paired with a mentor who has been there, or if you Contact us for an appointment. would like to become involved as a mentor.

HEALING ARTS Although we remain open, for your safety we are pleased to offer all our programs virtually during the COVID-19 crisis. Our schedule remains fluid as we react to ongoing social distancing guidelines. Please contact us for program updates.

Gentle Yoga Mindfulness & Meditation Tai Chi Gentle Yoga includes breathing A way of connecting with your natural An ancient martial art that consists of exercises, gentle and restorative yoga state of mind and breath to calm the a series of small, specific movements postures, and mindfulness exercises. mind. The goal is to improve your combined with deep, relaxation Yoga activates a relaxation response ability to relax, concentrate, and be breathing. Tai Chi’s goal is to improve and can help relieve feelings of anxiety aware of the present moment. Classes your ability to relax and de-stress, and and can help people with cancer are 1 hour and 15 minutes. has other benefits such as decreasing reconnect with their body. The goal of Rochester (1048 University Avenue) falls in the elderly and reducing the class is to relax, be mindful, and to • Offered Tuesday or Thursday arthritis. Classes are 1 hour and 15. improve range of motion and flexibility. afternoons and Saturday mornings Rochester (1048 University Avenue) Classes are 75 minutes in length. Canandaigua (First Congregational • Offered Saturday mornings and Participants benefit most when they Church) Thursday afternoons are present for the full duration of each • Wednesday evenings class in a 4 to 6 week session of classes. Voices & Vision Rochester (1048 University Avenue) Qi Gong An engaging writing class for those • Monday morning and evening A traditional Chinese practice combining interested in thinking creatively while • Tuesday morning and afternoon meditation, controlled breathing, and recording personal experiences, • Saturday morning movement to balance the flow of energy memories, feelings, and thoughts. Each • Sunday morning (qi) within the body. The goal is to week you will respond to prompts that improve overall health, combat stress, challenge you to reflect on the broader Dansville (Dansville Public Library) and promote healing. Classes are 1 hour aspects of life’s journey. For those • Thursday evenings and 15 minutes. interested, there will be opportunities to share your writing with the group. Geneseo (Morgan Estates Rochester (1048 University Avenue) Community Center) • Thursday afternoons or Saturday Rochester (1048 University Avenue) • Wednesday evenings mornings • Offered throughout the year; runs for five week series. Geneva (Geneva Public Library) • Monday evenings

Call us at (585) 473-8177 or email us at [email protected] if you have any questions, want to enroll in a class, or want to be added to our mailing list.

10 • Summer 2020 BreastCancerCoalition.org HEALING GIVE &GET LEARN ARTS SUPPORT

Although we remain open, for your safety we are pleased to offer all our programs virtually during the COVID-19 crisis. Our schedule remains fluid as we react to ongoing social distancing guidelines. Please contact us for program updates.

GIVE AND GET SUPPORT

Breast & GYN Cancer Group Common Ground: Surviving & Thriving on Gather, support, network, and discuss Living with Metastatic Breast or Aromatase Inhibitors your journey with others diagnosed Gynecologic Cancer Through increased movement, with breast or gynecologic cancer. Join others coping with a diagnosis stretching exercises, and nutrition, Professionally facilitated. of metastatic breast or gynecologic this ground-breaking program No registration required. cancer. Professionally facilitated. provides information, support, and Rochester (1048 University Avenue) empowerment for those prescribed Rochester (1048 University Avenue) aromatase inhibitors* who are • Discussion Group: 2nd and 4th • Lunch Group: 1st and 3rd Thursday experiencing joint pain or other side Tuesday of the month, 5:30-7:00 p.m. of the month, 12:00-1:30 p.m. st rd effects. (*Estrogen blocking medication • Discussion Group: 1 and 3 Thursday Although the discussion is topic- prescribed for hormone receptor of the month, 5:30-7:00 p.m. based, all concerns of those present positive breast cancer.) are addressed. Lunch and beverages Geneseo (Goodwill Community Room) Rochester (1048 University Avenue) nd th provided. Registration is requested. • Discussion Group: 2 and 4 • Wednesdays: September 2, 9, 16, Monday of the month, 5:30-7:00 p.m. Rochester (1048 University Avenue) October 14, 5:30 - 7:30 p.m. • Discussion Group: 2nd and 4th Registrants must commit to all four Brown Bag Discussion Group Thursday of the month, 1:00-2:30 sessions. p.m. Share your experiences and Each week a group of breast and GYN This program is supported with funds from the lend your support. No registration cancer survivors gather to discuss a State of New York Department of Health. wide variety of topics. Bring your lunch required. and we provide delectable treats. No registration required. Common Ground Partners: Young Survivor Soiree Partners of Metastatic Individuals A young survivor may identify with Rochester (1048 University Avenue) those who have faced breast or gyn • Fridays at 12:00 noon. NEW! NEW! NEW! NEW! NEW! cancer in the midst of a career climb, Batavia (First Presbyterian Church) Professionally facilitated group for while raising children, or perhaps • 2nd and 4th Thursday of the month, partners/spouses of those living with whose family plans have been derailed 12:00 noon. metastatic (or advanced) cancer. by treatment. We hold these soirees No registration required. four times a year as an informal and fun way to connect with others who LGBTQ+ Breast & GYN Rochester (1048 University Avenue) have walked a similar path. Cancer Group • Discussion Group: 3rd Tuesday of (1048 University Avenue) This monthly group offers support every month, 5:30 - 7:00 p.m. Rochester to LGBTQ+ breast or gynecologic • Call or email today to be added to our cancer survivors and their partners. invitation list. Professionally facilitated. Parent Networking Group NEW time! This discussion-based group supports No registration required. parents who are coping with the Rochester (1048 University Avenue) unique challenges as they face their • Discussion Group: 4th Wednesday of adult child's breast or gynecologic the month, 5:00-6:30 p.m. cancer diagnosis. Professionally facilitated. No registration required. Rochester (1048 University Avenue) • Discussion Group: 1st Tuesday of the month, 5:30-7:00 p.m. continued on pagecontinued 12.

BreastCancerCoalition.org Summer 2020 • 11 HEALING GIVE &GET LEARN ARTS SUPPORT

Although we remain open, for your safety we are pleased to offer all our programs virtually during Program Director Update the COVID-19 crisis. Our schedule remains fluid as we react to ongoing social distancing guidelines. By Jennifer Gaylord Please contact us for program updates. In February and early March 2020, our Executive Director, Holly LEARN Anderson closely monitored the COVID-19 situation. The Coalition Book Club staff could feel that change was If a traditional support group isn’t for you coming. Holly prepared us for the but you still like the idea of participating in a possibility of working remotely in supportive community join our Book Club. our homes while we considered what this would look like, given our Rochester (1048 University Avenue) varying duties. We considered what • 4th Thursday of the month, 6:00-7:30 p.m. we would need to continue serving not only our survivor population, but those newly diagnosed with breast or gynecologic cancer during the pandemic. My first thought was, Jennifer Gaylord, “How long would our survivors be Program Director without the community provided by the Coalition?” Our Office July 23: The Dutch House, by Ann Patchett Facilitator, Carol Moldt Manager, Michelle Lindsay, quickly garnered the tech professionals to allow staff remote access to Coalition resources. As Holly continued August 27: The Giver of Stars, by Jojo Moyes Facilitator, Dr. Patricia Somerville to monitor Governor Cuomo’s decrees, the day finally came when she directed us to pack up and set up our offices at home. September 24: Educated, by Tara Westover Facilitator, Ren vanMeenen At this point, I had only a vague awareness of the Zoom meeting platform. Michelle again came to the rescue and set us up with Zoom. Evening Seminars Over those first weeks, I walked many facilitators and presenters Evening Seminars bring information and through test Zoom meetings. There were definitely some bumps in the education to our survivors and community friends. Topics vary throughout the year. road and bugs to work out, but by the end of the first week, we were Upcoming events include: almost 100 percent up and running virtually. We hold virtual staff meetings, support/networking groups, Evening Educational Seminars, Rochester (1048 University Avenue) Book Club, Voices & Vision, Gentle Yoga, Meditation, Tai Chi, BC 101 and • July 22, 7:00 p.m.: “Clean, Green & GYN 101 sessions, and regional support groups and healing arts classes. Healthy,” Kate McCardle, Rochester Institute of Technology I now confidently use Zoom as a noun, verb and adverb. “I will set up • August 26, 7:00 p.m.: “ABCs of THC and a Zoom meeting.” “I will Zoom into the meeting.” “I am Zooming into CBD,” Patrica Mallaber, NP, University of the beginning of Book Club!” Rochester Medical Center • September 23, 7:00 p.m.: “Updates in Our transition to virtual provision of programs and services is nothing Gynecologic Cancer” Dr. Jennifer Brown- short of spectacular and very personal. Spectacular because we Broderick, Rochester Regional Health are able to provide gentle yoga, for example, to over 150 survivors in one session, including participants from all around New York Lymphedema Awareness Network State, the United States and even Bangkok! We have had support (LANROC) group members Zoom in from Buffalo, Virginia and Costa Rica! For anyone living with lymphedema. This transition is personal because we sit in our homes, displaying Caregivers, lymphedema therapists, medical our grey roots and grown out hair, seeing family members wander personnel, and those at risk for developing through, dogs barking, and cats being cats. We are all sharing an lymphedema are welcome. Professionally experience we couldn’t have anticipated a few short months ago. I facilitated. No registration required. am so very proud of how the Coalition staff rallied to make all of this happen, including the HUGE success of this year’s virtual Pink Ribbon Rochester (1048 University Avenue) • 2nd Wednesday of the month, 5:30-7:00 Walk & Run! p.m. Please contact me to learn more about our virtual offerings at [email protected].

12 • Summer 2020 BreastCancerCoalition.org Our Brown Bag Friday gatherings have become Zoom meetings during the COVID-19 pandemic, ensuring survivors of breast and gynecologic cancers remain connected and as supportive of one another as ever. Our very first virtual Brown Bag session was a call for email responses to a question about ways our survivor community is coping with the situation. Lovely responses came flooding in. Enjoy a mental health break by savoring some of the wisdom.

Slowing down allows one to appreciate all the little signs of spring: daffodils poking their heads up, buds swelling on the lilacs, and birds everywhere making nests. Regardless of what is going on in the world, JON'S BLUEBERRY nature prevails. CUCUMBER PASTA SALAD COVID-19 has helped us From F. Olliver’s website: folivers.com I am reading books that have been collecting SLOW down and spend dust for a while, trying to exercise every day, time together doing things This cool summer salad is easy to make, and go for walks. And binge-watching shows! that we have put off. Like tastes fresh and flavorful, and keeps well - getting more sleep! it's perfect for summer picnics! Salad I have been baking bread, which I love, catching up on long lost sewing 1 pound Flour City* Fresh Cucumber projects, doing puzzles with my husband, and reading. Friends have Gnocchetti or any short cut pasta, dubbed Friday concert T-shirt day, so we are sending around pictures of cooked al dente (about 5-7 minutes) ourselves in our 80’s t-shirts. 3 cucumbers, peeled, halved, seeded, and sliced I went to the beach on a It reminds me of when I was little and 1 pint fresh blueberries "vacation treasure hunt". I had the whole day to play and decide 3 tablespoons fresh mint, thinly sliced what I was going to do. I take a nap stuffed small bags into my 4 scallions, thinly sliced pockets to put my treasures in. each afternoon, because I do wake up I took vacation-like photos of in the night with some scary thoughts 1 cup feta cheese beautiful waves crashing onto and anxiety. Then the morning comes the shoreline. When I came and there is a new day. Dressing home, I washed my treasures ¾ cup extra virgin olive oil: F. Oliver’s and will someday make a craft We are having an epidemic of Fresh Pressed Meyer Lemon, F. Oliver's with them. To self-quarantine kindness towards each other. This Garden Fresh Gremolata, or medium or social distance, one can still is an epidemic I hope will last well single varietal EVOO have an adventure. beyond COVID-19! ¼ cup white balsamic: F. Oliver's Lemon Bouquet, F. Oliver's Aromatic Oregano, or F. Oliver's Classic White Here are my ways of coping: I am playing Balsamic • Stay off the internet except for a quick check-in a CDs, which are couple of times a day. compilations of 1 tablespoon honey • Clean up the gardens, a cupboard, or a drawer. music from the 2-3 tablespoons freshly squeezed • Read a good book. 50's thru the orange juice • Bake! If you have a favorite cookie recipe 80's my husband Combine cooled pasta with the fresh you haven't used in years (and you have the made. I dance ingredients. Mix the dressing, toss ingredients) go ahead! The stress will burn calories. to the music in with the salad, add salt and pepper • Write some letters the good old-fashioned way... my living room. to taste. Serve cold or at room imagine the surprise! Good exercise temperature. • Stay in touch with those you love through and good *flourcitypasta.com technology such as Facetime, Skype, Zoom, Team. memories!

BreastCancerCoalition.org Summer 2020 • 13 More than $900,000—that’s how much the Coalition has given since 2003 to support breast cancer research in our region. This year, thirteen research grant proposals were submitted for funding through the Coalition's Research Initiative. A review panel composed of eight scientific researchers and seven survivor/advocates selected the proposals to be recommended for a 2020 Pre- and- Post Doctoral Trainees/Fellow Grant of $25,000 and a 2020 Faculty Grant of $50,000. These selections were then presented to and approved by the Board of Directors. Including this year's awards, the Coalition has now provided $926,125 in funding to researchers in Upstate and Western New York. Helene Snihur The recipients and their proposals represent a cross-section of both research Research Administrator backgrounds and topics: • Matthew Lee Tan, recipient of a trainees/fellow grant, is a fourth-year PhD student at Cornell University. He is the son of Cambodian immigrants and a first-generation college student. His study, titled “Investigating the Role of Metabolism and the Perivascular Niche on Breast Cancer Stem-Like Cell Properties,” will examine how endothelial cells and nutrient transport in perivascular niches (regions near blood vessels where cancer stem-like cells [CSCs] are frequently found) can affect CSC characteristics and metabolism. Results of this work will help inform new strategies to target CSCs with the potential to prevent metastasis, lead to new therapeutic approaches, and ultimately improve patient outcomes. • Dr. Isaac Harris, an Assistant Professor at the University of Rochester Medical Center and Associate Member at Wilmot Cancer Center, is the 2020 Faculty Grant Recipient. His entire research career has been focused on breast cancer, and his Coalition- funded study will focus on “Uncovering the roles of extracellular glutathione in triple negative breast cancer.” His lab has discovered that triple negative breast cancers (TNBC) rely on antioxidants to survive. They hypothesize that TNBC captures antioxidants in the blood, and uses these resources to grow and survive drugs intended to kill them. The Harris Lab plans to find ways to kill TNBC by blocking the proteins that liberate circulating antioxidants. The studies have the potential to benefit patients with TNBC. The Coalition’s research grant program, unusual for a non-profit “grassroots” organization, began in 2003 with a single grant of $25,000. Recipients are affiliated with and conduct their projects in institutions located in the Coalition’s coverage area. Through our funding, recipients are given the opportunity to generate data needed to apply for larger grants from such major organizations as the Department of Defense and the National Institutes of Health.

14 • Summer 2020 BreastCancerCoalition.org THINK BEFORE YOU PINK In response to growing public concern about the number of pink ribbon promotions and consumer products, early leaders of the Coalition participated BIOCELL textured breast implants and in the development of an initiative called Follow the Money. Launched in 2002 tissue expanders, manufactured by and eventually renamed Think Before You Pink, the project is now overseen Allergan, are just one of many types by the national organization Breast Cancer Action and receives our ongoing of implants used in certain breast support. The initiative offers four essential questions for consumers to ask reconstruction procedures after a when considering where their donations and purchases will have the most mastectomy. They were recalled meaningful impact. on July 24, 2019 due to evidence showing this type of implant is 1. Does any money from this purchase go to support breast linked to an increased risk of breast cancer programs? How much? implant-associated anaplastic large The pink ribbon is ubiquitous. It’s an easily recognized but cell lymphoma (BIA-ALCL). On June unregulated symbol. It’s not always clear how much, if any, of the 1, 2020, Allergan launched External money consumers spend on any particular pink ribbon product will Link Disclaimer, a campaign to contact actually support breast cancer programs or research. Read the fine patients who may not be aware of the print! Instead of paying extra for a pink-ribbon product, consider recall. giving to the local charity of your choice, where your dollars will BIA-ALCL, a rare type of non- have the greatest impact in your own community. Hodgkin’s lymphoma, is most often found in the scar tissue and fluid 2. What organization will get the money? What will they do with near the implant. In the majority of the funds, and how do these programs turn the tide of the cases, surgery is curative, although breast cancer epidemic? more widespread disease has occurred in a few. As of January 24, Before making a purchase, check the recipient organization’s 2020, approximately 307 cases were website. If its mission is unclear (for example, “raising recognized in the United States. There awareness” is a vague term), its activities out of line with your are 33 known deaths worldwide from own personal values, or you can’t tell what the organization the disease.1 does, reconsider your purchase. Most often, the signs of BIA-ALCL are 3. Is there a “cap” on the amount the company will donate? Has persistent swelling or pain around the this maximum donation already been met? Can you tell? implant, but patients should report any changes in the area to their When companies set a maximum donation from the proceeds of plastic surgeon or another health a pink ribbon item, consumers have no way to know when that care provider. Due to the low risk limit has been met, even though the product often remains on of developing BIA-ALCL, preventive store shelves and continues to be sold. Consumers may think they removal of the implant is not are supporting a good cause when, in fact, the producer of the recommended. product is profiting. People who are not aware of the 4. Does this purchase put you or someone you love at risk BIOCELL recall or do not know the for exposure to toxins linked to breast cancer? What is type of implant they have or their the company doing to ensure that its products are not implant history, should: contributing to the breast cancer epidemic? * Go to www.BIOCELLinformation. When scientific evidence indicates a link between certain com to determine if the company has chemicals in some consumer products and breast cancer, it their implant information. is unethical for companies seeking to build a reputation of * Contact their surgeon or hospital concern about the disease to market pink ribbon products where they received implants containing these substances. Since many of the products in to determine if the surgeon or question are personal care items such as cosmetics and perfume, it helps hospital has records of their implant to have an unbiased resource when considering these purchases. The information. Environmental Working Group is one such resource (ewg.org). 1. https://biaalcl.com/about-bia-alcl/

BreastCancerCoalition.org Summer 2020 • 15 REDEFINING COMMUNITY: Walking and Running for the Coalition By Meredith Utman

The 19th annual Pink Ribbon Walk & Run became a virtual event this year due to the COVID-19 pandemic. More than 1,100 participants registered for the transformed event, coming together over Mother’s Day Weekend while staying apart and practicing social distancing guidelines. Together, they raised over $155,000 in profit to support the Breast Cancer Coalition! Anyone anywhere was able to join the fun safely this year, and the event included participants from our 10-county Finger Lakes region, from 20 states throughout the country, and even Canada! They walked and ran in their neighborhoods, on hiking trails, in parks – in countless different places. Many walkers and runners captured the day in photos and shared them on their social media platforms or with Photographs by the Coalition – creating a Ria Tafani Photography real sense of community by virtual means. Cancer does not stop because of COVID-19. Neither does the Coalition. And neither do you! All the funds raised through the walk & run will be used to provide education and support programs for survivors, to support advocacy efforts and to promote research on breast cancer. Thank you to everyone who participated in the 2020 VIRTUAL Pink Ribbon Walk & Run!

16 • Summer 2020 BreastCancerCoalition.org We are grateful for the support of our sponsors:

PRESENTING SPONSOR:

presented by 1,102 Number of s GOLD SPONSORS: participants s TOP INDIVIDUAL FUNDRAISERS 5 e 1. Holly Anderson $8,061.00 c 2. Sloane Miller $7,705.00 c 3. Patti Cataldi $3,645.00 u 4. Melisande Bianchi $3,200.00 S 5. Dawn Lee $2,945.00 to SILVER SPONSORS: 36 Individuals d raised more a 200+ than $500 o participants from our 9 county R region (outside One Lucky Guy Monroe County) Ralph Whiteman l a 28 members u Jber, Alaska Biggest Team: t Farthest away BRONZE SPONSORS: Quatela Center r participants for Plastic i Aristo Surgery ESL Federal Credit Union V GW Lisk Leonard’s Express r TOP 5 TEAM FUNDRAISERS Utica Boilers 20 1. Sloane's Squad 2020 $7,885.00 u PINK SPONSORS: States 2. Team BFF $5,195.00 represented Bond O 3. #TeamPamPolashenski $3,310.00 Schoeneck & King, LLP Tom & Maria Cook 4. One Webster $2,470.00 93 Companion Care of Number of 5. Mama Bear's Cubs $2,205.00 Rochester out-of-state Fp Wellness participants Mona Moon Naturals Quebec, Canada Osborn Reed & Burke, LLP Countries outside U.S.

BreastCancerCoalition.org Summer 2020 • 17 FINGER LAKES REGION OF CENTRAL & WESTERN NEW YORK

Miriam Steinberg, Regional Services Director REGIONAL OUTREACH

When Governor Cuomo announced that due to COVID-19 everyone except essential workers had to stay home, there were many L-R front row, Besty Crumity, Phyllis Connelly, Rebecca Solomon, Peg Jacobs, Barb challenges that followed. The Legere, Silvia Gambacorta, Melisande Bianchi, Kathy Cunningham Coalition staff made the transition L-R back row Jennifer Gaylord, Ali Dennison, Miriam Steinberg, Lori Meath, Holly to working from home and figuring Anderson, Patti Cataldi, Deb Hennekey, Deb Bishop, Owen Toale out a way to continue to provide programming for the breast On Tuesday, March 10th, eighteen advocates set out before dawn to travel and gynecologic cancer survivor to Albany in support of the Breast Cancer Coalition’s regional programming. community. The decision was We had survivors, supporters, Board members, staff, and regional program made to switch all of the Coalition participants. programming including regional, to virtual. Thanks to a wonderful We spent the day bringing awareness of our work in the Finger Lakes and group of facilitators, we have been Central NY area and building relationships with these elected officials and their able to offer regional Gentle Yoga staff in an effort to brainstorm the most effective ways to continually get the via Youtube videos; Mindfulness, word out about our programming. Meditation, & Relaxation, Batavia Brown Bag Discussion group, and We also thanked our regional Senators and Assembly members for the diligent Geneseo Support/Networking group work they do to ensure funding for our regional programming and also to ask via Zoom calls. The silver lining to for continuation of that funding to keep the programming going. this is that people throughout the We would like to extend our appreciation and thanks to the following elected region can now try out classes with officials and their staff members for taking the time on March 10th to meet facilitators in different cities now with us regarding the work we do for the Upstate survivor community. that geographic location is no longer an issue. • Lieutenant Governor Kathy Hochul Keep an eye on the website calendar • Senator Pamela Helming for updates and schedules for the • Senator Patrick Gallivan regional programming and always • Senator Gustavo Rivera (Chair of the Senate Health Committee) feel free to email or call me if you want further information about any • Senator Julia Salazar (Chair of the Senate Committee on Women’s Health) particular session. • Assemblyman Harry Bronson • Assemblyman Richard Gottfried (Chair of the Assembly Health Committee) (585) 473-8177 x 310 • Assemblywoman Melissa Miller [email protected] • Assemblywoman Marjorie Byrnes

18 • Summer 2020 BreastCancerCoalition.org FINGER LAKES REGION OF CENTRAL & WESTERN NEW YORK

L-R front at table: Barb Legere, Silvia Gambacorta, Ali Dennison, L-R: Melisande Bianchi, Ali Dennison, Holly Anderson, Rebecca Solomon, Melisande Bianchi, Deb Bishop, Owen Toale; Lieutenant Governor Kathy Hochul, Owen Toale, Patti Cataldi L-R back: Betsy Crumity, Jennifer Gaylord, Peg Jacobs, Patti Cataldi, Phyllis Connelly, Kathy Cunningham, Deb Hennekey, Senator Pamela Helming, Bethann Miller, Holly Anderson, Miriam Steinberg, Lori Meath

L-R front: Rebecca Solomon, Phyllis Connelly, Assembly woman Melissa Miller, Silvia Gambacorta, Barb Legere; L-R back: Jennifer Gaylord, Kathy Cunningham, Patti L-R front: Silvia Gambacorta, Barb Legere, Sherri A. Salvione Cataldi, Deb Hennekey, Holly Anderson, Deb Bishop Legislative Associate Office of Assembly Member Richard N. Gottfried, Betsy Crumity; L-R back: Jennifer Gaylord, Owen Toale, Holly Anderson, Miriam Steinberg, Lori Meath, Deb Bishop

L-R Bethann Miller, Deb Hennekey, Asssemblyman Harry Bronson, Lori Meath, Miriam Steinberg, Betsy Crumity

L-R front: Silvia Gambacorta, Rebecca Solomon, Kathy Cunningham, Barb Legere, Phyllis Connelly; L-R back: Peg Jacobs, Jennifer Gaylord, Assembly woman Marjorie Byrnes, Deb Bishop

Holly Anderson and Assemblyman Brian Mantelow L-R front: Peg Jacobs, Patti Cataldi, Phyllis Connelly, Ali Dennison, Rebecca Solomon; L-R back: Bethann Miller, Kathy Cunningham, Senator Patrick Gallivan, Melisande Bianchi, Deb Hennekey BreastCancerCoalition.org Summer 2020 • 19 FINGER LAKES REGION OF CENTRAL & WESTERN NEW YORK

REGIONAL SURVIVOR Pam Wolf By Miriam Steinberg

I sat down with Pam Wolf on Thursday, Pam remembers feeling unable to fully March 5 to interview her for this comprehend what her doctor was story. We met following the monthly saying; it took a while for the news to meeting of the Dansville Coffee Group, sink in. When the doctor asked if she an informal gathering of women from had any questions, Pam replied that the Dansville area who are survivors she didn’t even know what to ask. Her her long to “find her groove”- the of breast, gynecologic, and other doctor went on to explain about the gatherings can get animated and cancers. This informal support group medical team that would be working boisterous at times - and soon Pam began after many of the participants with her and asked her to be sure to started sharing her story and asking met at a Gentle Yoga session provided let him know if she had any questions. questions. She had discovered a by the Coalition in Dansville. On this The fact that Pam now had a ‘team of community of women willing to share particular morning, fifteen women doctors’ felt overwhelming; she didn’t their experiences and their support. had gathered at the coffee shop for quite know what that meant. Pam’s These women stepped up to drive the meeting. Unfortunately, due to doctor was right there with answers, Pam to her treatments and stayed the COVID-19 situation, they have explaining that her first step would be a with her so she wouldn’t be alone. not been able to meet since. But as consultation with a medical oncologist They have done this for many other many of us now know, support and to discuss the initial phase of her women in the group as well. friendship can’t be stopped by a treatment. pandemic. The group members stay in Although she found the side effects contact, although now it’s by phone. Pam didn’t have to wait long; her of chemo to be rough, Pam eventually I mention the coffee group because medical oncology appointment was finished all sixteen rounds of these women play a significant part in scheduled within a week. During chemotherapy. Besides losing her hair, Pam’s story. that visit, she learned her treatment she experienced some cognitive issues, would begin with sixteen rounds sometimes referred to as “chemo In December of 2018, Pam woke in of neoadjuvant chemotherapy. brain,” a condition that has been the middle of the night with a burning (Neoadjuvant treatment is intended improving since chemotherapy ended. pain under her right arm. Reaching up, to shrink a tumor before the main Another side effect has been lingering she felt a lump in her armpit. The next treatment, which is usually surgery.) neuropathy in her hands and feet. morning, she contacted her primary A week later, a port was inserted to care physician. Upon examining the facilitate chemotherapy infusions, A bright spot during this time was a lump, the doctor referred Pam to a which began in February of 2019. helpful connection Pam formed with surgeon who recommended a biopsy. one of her chemo nurses. Without She was able to schedule her biopsy Fearful when she heard about the side him, Pam said, she wouldn’t have within a week. On December 27, she effects of chemo, Pam recalls that, gotten through it. For her, the walk received the results; Pam had breast at the time, she didn’t know anybody into the hospital and to the office cancer in her lymph node only. She who had breast cancer; no family was, emotionally, the hardest part. is one of a very small percentage of member nor any friends. She wasn’t This nurse kept an eye out for her and patients diagnosed with breast cancer sure who to talk to for support. It offered encouragement, reminding who never experience a lump or any was during this time that Pam began her that she could do this. It was just other symptoms in the breast; the attending the coffee group mentioned the kind of support Pam needed. earlier. As one with a naturally quiet condition is called hidden or occult It was difficult for Pam to get used to breast cancer. Pam’s doctor referred demeanor, Pam listened intently without saying much for the first changes in her appearance. Her hair her for a PET scan, which showed no began falling out about two weeks tumors in her right breast. couple of meetings. But it didn’t take 20 • Summer 2020 BreastCancerCoalition.org FINGER LAKES REGION OF CENTRAL & WESTERN NEW YORK after chemo began and shortly after Pam now has people to call who that, she lost her eyebrows and understand what she’s going through; eyelashes as well. She purchased that, for her, is huge. some scarves and eventually got a wig, but was still keenly aware of peoples’ stares. Pam didn’t want to be viewed as someone who was sick. After Pam finished chemo, another PET scan and ultrasound showed the tumor was shrinking. This was good news as she began the next step: twenty-eight rounds of radiation treatments. Finding herself very tired after each treatment, Pam usually Pam's very special model plane went home afterwards to sleep. The only side effect that caused her any distress was irritation to her throat One thing that has brought joy to and lungs, which resulted in a week- Pam during all this came from her long break from treatment. When oldest daughter Krystina, who works radiation was finished, Pam waited for American Airlines. The airline, six weeks to heal before undergoing in collaboration with a group called a mastectomy and removal of ten Stand Up to Cancer (SU2C), was lymph nodes. During the surgery, an launching a promotion to provide expander was inserted to begin the a once-in-a-lifetime opportunity to reconstruction process, which took add a loved one's name to a plane three months in total. She received in honor of those who are cancer great news when the pathology came survivors, currently fighting cancer, back clear; chemotherapy had done and those who have been lost to the its work. Pam continues with physical disease. therapy to address a buildup of scar tissue and increase her range of Those who donated to Stand Up motion, which has been a challenge, To Cancer (SU2C) during the month yet she forges ahead. At the time of of July 2019 could add the name of our interview, Pam’ reconstruction a person they stand up for to an surgery was scheduled two weeks American Airlines Airbus A321. The later. Unfortunately, due to COVID19, plane, which was wrapped with a that surgery has been postponed. special SU2C design including the names submitted, was ready to fly in Through it all, Pam has had a great November 2019. Krystina submitted deal of help and support from her her mother’s name, and it is now on mother, her two daughters and her the left wing. Pam received a model of son. She also began attending the the plane, which she proudly displays. Coalition’s gentle yoga sessions in Dansville, where she met the women Still adjusting to her new normal, Pam from the previously mentioned is not walking as much as she used coffee group. Pam also attends a to because of neuropathy in her feet support group at the hospital, which is and has not yet regained her pre- facilitated by a social worker. Talking diagnosis energy reserves. Although with others has truly helped her, anxious to resume her normal level Pam says. She appreciates hearing of activity, she’s trying to be patient other people’s stories and gathers while waiting the year or so her helpful suggestions while listening doctors have said it may take for that to them. Meeting people who are to happen. Pam feels she’s not quite going through similar experiences has herself yet, but she’s getting there helped dispel her feelings of isolation. with a little help from her friends.

BreastCancerCoalition.org Summer 2020 • 21 Alexa’ LaDuke continued from 3 Ringing the Bell report became available, it showed daughter rang the bell in the waiting By Gerry Bergstrom estrogen and progesterone were room of the infusion center signifying growth factors in her tumor. This the end of active treatment. (Read on meant her cancer would respond to for her words about that experience. targeted hormonal therapies. A lymph node removed during surgery was Ten months after her diagnosis, Alexa’ also found to contain cancer cells. underwent a complete hysterectomy Chemotherapy and radiation, which to reduce the risk of recurrence of had been on the radar for Alexa’ her estrogen-based cancer. That risk and her doctors, became strongly is further reduced by a daily oral recommended. medication, Tamoxifen. She also receives monthly infusions of the Chemo came first. The most bone-building agent, Zometa. challenging side effects for Alexa’ Gerry and Alexa' Shortly after her diagnosis, were bone pain and fatigue, so she Any time my daughter heard the bell hired a nanny to help ensure her close childhood friends Nicholas Haralambides and his sister, Jenn, ring at the cancer center, she lowered children’s lives and activities would her head and would refuse to look up. remain as close to normal as possible. steered Alexa’ in the direction of the Coalition, where she met with Alexa’ hated the place. She hated the A cold cap, which she opted for during parking space that said "Reserved for her chemo infusions, helped keep our Director for a Breast Cancer 101 session. After being matched with a Patients." She hated the sign on the her hair loss at around fifty percent; building that said "Cancer Center." an amount noticeable to her but mentor through our PALS program and attending support groups and She averted her eyes from the bald barely detectable to others. Knowing heads in the waiting room. Every that the success of cold cap therapy Healing Arts classes, Alexa’ has forged deep connections within our survivor three weeks, she would be there for varies widely from person to person, chemotherapy infusions, and after Alexa’s choice was driven by the community that sustain her to this day. months of those visits, she went back desire to maintain as much normalcy every day, five days a week for nine as possible for Kinsley and Kaiden, Sadly, Alexa’s marriage ended about weeks for radiation therapy. including their mom’s appearance. For a year after she was diagnosed. But her, it was helpful. she is not flying solo. She, Gerry, On her good days, Alexa’ felt one Kinsley, and Kaiden – along with their of two things: she either refused to While recovering from her believe she had cancer or was filled hospitalizations, Alexa’ found it two beloved dogs - form a complete household and enjoy life to the with optimism she would beat it. On difficult to hear her children’s laughter her bad days, she feared she would drift in through her open bedroom fullest. The many life changes she underwent prompted a career change die regardless of what she or anyone windows and not be part of the fun. else did. That bell bothered her even She received photo texts from close for Alexa’, who retired from nursing to open her own interior decorating on her good days, but especially on friends, Monika, Nicole, and Giovanna, the bad ones; the way the people who graciously took her kids on business, Style of Serenity (www. styleofserenity.com). clapped as a patient rang it and how adventures. But feelings of distance everyone would "high five," and from her children’s lives were, for In a heartfelt journal entry, Alexa’ hug one another. She thought it was Alexa’, hard to bear. Her first post- wrote, “I drive and think of things dumb to celebrate being done with op goal was to be in the driveway pre-cancer and look back upon them chemotherapy or radiation. As only when Kinsley left for her first day of with such rose colored glasses…all I her mother would understand, Alexa' Kindergarten. Not only was she the think is how I want to go back to those was too afraid to believe that she driveway, Alexa’ went to orientation carefree days where my biggest worry would ever really be cancer free. and on a field trip in the middle of was how to accomplish all I had to do chemo. that day…Those are the days I thought She sat in that waiting room week after week and looked down at the After chemotherapy was finished, were so stressful. The days I wished would pass quickly. Now I realize that floor, or buried herself in a magazine radiation therapy came next for that she wasn't really reading, Alexa’. The weeks of treatments those were the days to love and to embrace.” ignoring the bell and the people meant daily trips to the cancer center, clustered around the patient ringing and Alexa’ is grateful she did not Alexa’ now embraces every day. it. Then one day, lost in thought as experience any side effects from she sat waiting to be called back, this treatment. Gerry witnessed *** the emotional moment when her Continued on next page.

22 • Summer 2020 BreastCancerCoalition.org FRIENDS REMEMBERED We celebrate all who set an unwilling foot on this path, along with our friends and supporters. Quintina (Tina) Bond Jennifer Gravitz Marlene Caroselli Linda MacDonald Lisa (Lee) Mills-Runyan Christine Martin Tom Cook Gail Palluconi Joseph Errigo Patricia Woodin Betty Gleason

Pat Battaglia continued from page 6 Approaching the door to the infusion center for my first I no longer think in terms of abyss, or emptiness, in the treatment felt at first like walking toward yet another face of very difficult situations. It is times like these abyss. Instead, beyond that door were compassionate when community matters most. Allowing our support nurses who treated me with kindness, concern, and communities – or our networks, tribes, or any name we respect. They continue to do so and always welcome me choose to give them – to grow and evolve according to cheerfully for each infusion. our changing needs is a survival mechanism. This is just the sort of community encouraged at the Coalition in so As the second year of my walk with metastatic breast many different ways, and for me, it has opened a door cancer unfolds, I cannot say this will ever be easy. But I will into a welcoming, safe space. At this time, with the threat never be alone. My family and friends walk with me. My of COVID19 before us, that space is virtual. But it is real, colleagues at the Coalition do likewise. And my Common nonetheless. Ground Peeps are a lifeline. Their stories are uniquely their own, but we share a common experience – the ups and We open the door to community by telling our stories. downs, the gains and losses, the outrageous joy of being Please share yours. Contact me at [email protected]. alive – together.

Teresa Beach continued from 9 helped our family.” Countless friends, old and new, rose “I have experienced a lot of losses,” Teresa shared. Her to the occasion. They organized meals, transported Teresa strength, stamina, and yes, her hair are among those to and from treatment, and ensured the twins had rides losses, but are slowly returning. “And there are a lot to and from their sports and music commitments. “Don't of blessings. Gratitude for each day is an unexpected be afraid to accept help,” she would advise others on a blessing.” similar path.

Ringing the Bell continued from previous page Alexa’ looked up and saw the smiles on all the people in someone was in "her spot." She now believed that the the waiting room. She suddenly realized that the bell didn't people working in that building with the "Cancer Center" mean a cure. The bell didn't mean that everything was sign were wonderful. When she checked in, she would talk going to be okay for all who rang it. The bell meant hope. with the receptionist like they were old friends. People Every time someone rang it, the patients still in treatment knew her, said hello to her in the hallways, and asked were filled with hope that they too would one day be able how her children were. It was suddenly a happier place to ring that bell. for her. Alexa’ rang that bell after her last chemotherapy treatment with zest for life. She invited her children to Finally, that day came for Alexa'. By then, she had decided help her ring the bell again after radiation ended, full of the parking space that said "Reserved for Patients," hope that everyone in the waiting room understood she belonged to her, and would joke when she pulled in and was ringing it for HOPE.

BreastCancerCoalition.org Summer 2020 • 23 DEVELOPMENT/SPECIAL EVENTS DON’T STOP Valerie J. Pasquarella, Development Director AThe Voices of SurvivorsPrayer When COVID-19 I take delight in tapping my finger arrived in Western on the white ceramic bowl New York in mid-March and A choir of birds in the brightening sky nonessential businesses began I need no other music their (hopefully) So full of spring in my mind temporary closures, and we received word The glory of the sun about the prohibition of large gatherings, The light is different fundraising It is new every day professionals started panicking. Many There is so much else happening nonprofits, including the Coalition, had Valerie J. Pasquarella I instruct myself fundraising events Director of Development scheduled for April to seek stillness and May. We also had spring appeal mailings planned. My prayers are songs Perhaps major gift solicitations were on the table. What should we do? It wasn’t an easy question to answer. We My prayers are made of quiet could look to other crises such as the 2008 recession or the attacks on September 11th, but this wasn’t quite the It inspires me to create more same. The future seemed very uncertain. My prayers are made of laughter and smiles So we started talking to each other. Brainstorming. My prayers are made of the most delicate strands of hair Attending webinars and Zoom meetings with experts and consultants. One only had to listen to two or three My prayers are made of stone-cold silence colleagues before a theme began to emerge: Don’t stop trying to raise the funds necessary to keep going. Every day I see the light stream through DON’T STOP because our mission is still vital. Sounds and sights bring comfort Sounds and sights bring fear DON’T STOP because our communities still need our programs and services. My prayers are made of women in community DON’T STOP because donors still care about who soften my sharp edges organizations and want to help. teach me other ways to react For the Coalition, this meant we still mailed our spring appeal. We transitioned our 19th annual Pink Ribbon let her know she is not alone either Walk & Run to a virtual event. We participated in Dawn finds its way Giving Tuesday Now. We did this because CANCER DOESN’T STOP, AND NEITHER DO WE. The funds It is new life and it makes me hopeful provided through our appeals and events are vital to our ability to fulfill our mission and to support our survivor I pray that I find joy in the journey of this new day community. I pray Thank you to everyone who joined us in saying, “I’m humans to awaken. not stopping,” and either made a gift or joined the virtual walk and run or did both. We deeply appreciate Created by Ren vanMeenen, Voices and Vision facilitator, using your commitment and generosity – NOW MORE the words of Voices and Vision participants THAN EVER.

24 • Summer 2020 BreastCancerCoalition.org LIGHT PALS Update SPOT By Pat Battaglia As I write, the COVID-19 crisis is heavy on the minds Jennifer Ulrich of everyone I know. The fact that this has affected every Making a person on the planet to one degree or another is mind- Difference, boggling to me. Among those most significantly impacted Stitch by are people facing a recent a cancer diagnosis. With our Stitch health care systems strained Her survivor’s story has to the limit, questions about graced the pages of scheduling surgeries and this publication. Her exquisite quilting has added a treatments abound; questions Pat Battaglia, compassionate touch to PALS paks and encouraged that were unthinkable a few Associate Program Director generous donations at our ARTrageous Affair. Her weeks ago. For instance, who words of gentle wisdom and uncompromising self- could have predicted that those entering the hospital for advocacy have lifted spirits and inspired many of lifesaving procedures would, for safety’s sake, ever need her fellow Brown Bag attendees. As a PALS Mentor, to leave their loved ones behind at the door? At stressful her calm, steady presence has offered hope to the times, a simple hug goes a long way. Yet our necessary and newly diagnosed. And, in the face of the COVID-19 lifesaving social distancing measures drastically limit that. pandemic, Jennifer Ulrich has worked tirelessly to How does one cope with such a scenario? make a difference for many in our community; she In these unforeseen times, our PALS mentors have has stitched together a countless number of face stepped up to bat for those newly diagnosed with breast masks for distribution in our PALS paks, for our staff and gynecologic cancers. They “keep on keeping on”, members, and for many others. reaching out to individuals making surgical and treatment Jen, as we know her, was one of the first survivors decisions during this pandemic. Although people facing who Ali Dennison, our Program Assistant, came to a cancer diagnosis during this pandemic are dealing with know after starting her position at the Coalition unprecedented levels of uncertainty, our mentors have two years ago. To their mutual surprise, Jen and Ali continued to listen and respond to their concerns with realized their mothers, both of whom were from compassion and insight. Under these difficult conditions, England, had been friends. “Jen is one of the kindest, PALS mentors haven’t missed a beat. Time and time again, talented, and most giving people I know,” Ali said. they have shown they are just as adaptable, empathetic, “She so thoughtfully shares her gifts by making and genuinely helpful to their mentees as they have beautiful quilts for survivors. I love when she brings always been. I am humbled and grateful to work with these masterpieces to show us, and I enjoy listening such a group of dedicated, caring volunteers who give so to all the details that went into making them. She generously of themselves. often attends our Brown Bag Friday group and has Whatever changes this crisis has brought, one thing the most insightful things to say. I always learn remains constant: our PALS mentors are a group of something new from her. Since the coronavirus individuals with deep resources of inner strength. Since pandemic began, she continues to go above and the inception of this program in beyond by making masks for any survivors that need 2008, they have reached out to them. When I wear mine, I feel like Jen is right here the newly diagnosed and shared with me keeping me safe and protected. Jen is truly a stories of hope and healing. And kind soul.” nothing, including a pandemic, Jen’s bright thread of compassion is woven can deter them. throughout our survivor community and in our hearts at the Coalition.

Thank you, Jen! PALSSM PROGRAM (585) 473-8177 x 302; [email protected]

BreastCancerCoalition.org Summer 2020 • 25 PlanningFUNDRAISING a fundraiser? FRIENDSFor guidelines and assistance contact Lori at (585) 473-8177 x 304 or [email protected].

OUTREACH DIRECTOR UPDATE ALL FOR MOM We especially cherish the gifts For the Coalition, as for we receive from young people so many others, March in our community. came in like a lamb. Our programs were humming As Peter D looked toward his along, we were gearing upcoming 11th birthday, he knew up for the Pink Ribbon he wanted to include his Mom Walk and Run (our largest in his celebration. Peter’s mom fundraiser of the year), faced breast cancer in 2017, and and I was gathering it had been a tough time for volunteers for the ten their entire family. day Lilac Festival. In support of the programs the Coalition offers for people like Peter’s mom Anne and the local research we fund, he And then came COVID-19. Lori Meath decided to ask for gifts to support that work in honor of his In those early days, I was mother. struck by a stunning question: can I do my job? Peter, we thank you and your friends for your donation of Can I really be effective at outreach if I can’t go $100. What a great “reverse” birthday gift! anywhere? In the absence of the Lilac Festival; in the face of our Walk and Run becoming WORKING HARD, PLAYING HARDER virtual; in light of the suspension of all health fairs, conferences, lunch and learns, newsletter deliveries, and community fundraisers…was Community Outreach relevant? That answer also became quickly clear. We need MORE THAN EVER to reach out to the community around us. We need to spread the word that we are here and “open” virtually. We need people to look toward supporting our Mission beyond these confounding days; to ensure next year’s Research Grant Award, to grow our support and Healing Arts programs, to continue our advocacy efforts, to educating our greater community, to spread the word about all of the above. We need to thank our community for all they have done and tell them For the third year, the Monroe County Fire Bureau Hockey how they can help us in the future. team has dedicated the proceeds of their February We need our beloved volunteers to continue to tournament to the Breast Cancer Coalition. Bundled “volunteer” by registering for the virtual walk; against the frigid indoor temps of the Lakeshore Ice Arena, by sharing the message that we ARE open and friends and families of these firefighters (some of whom had worked all night!) gather for a spirited, fast-moving available to anyone who needs us, even now; contest against rival teams from Auburn NY and the by telling your faith community, book club, wine Rochester Americans Warrior Hockey veteran group on group, and exercise friends how much we need February 8. THEIR help right now. Though it would be hotly debated, there were no “losers” The longer this COVID-19 situation goes on, the on an afternoon of competition, food, and raffles. And the more important outreach is to us and to our real winners- the survivor community of the Coalition, in community, and the more important YOUR part is whose honor a gift for $3000* was presented by event in sharing the message! coordinator/Firefighter Michael Stoerger. Thanks to Mike, his hardworking family, and the incredible generosity of all who attended. LEARN MORE ABOUT OUTREACH *We were also thrilled to receive a donation directly from (585) 473-8177 x 304 the Rochester Americans Warrior Hockey team for $250! [email protected] Continued on next page.

26 • Summer 2020 BreastCancerCoalition.org FOR THE LOVE OF AMY Planning a fundraiser? For guidelines and assistance contact Lori at (585) 473-8177 x 304 or [email protected].

BIG RESULTS FOR A LITTLE LEAGUE

store’s campaign toward education Amy Schnitzler was a light in the of its primarily female customers, lives of all who cherished her energy, The Fairport Little League and partners with the Breast Cancer her sassy wit, her sly humor and her organization is a “family.” Vice Coalition to highlight our own LOCAL unflinching, un-failing honesty in the President of Operations Lou Bianco research initiative. face of the cruelty of a cancer diagnosis is a beloved member of that family at 26 years old. Certainly no one misses This year, the Eastview crew raised and is also the husband and father irrepressible Amy more than her loving $602 to support our work. breast cancer survivors Diane Bianco mother, father and brother. and Rosemarie Morrison, diagnosed HEROES IN IRONDEQUOIT with breast cancer in 2017 and 2018 Prior to Amy’s death in December, her respectively. dad Gary Schnitzler had planned a musical fundraiser to assist Amy with The organization recognized and the burden of her frequent out of area honored these women and many trips for treatment. A talented and more friends and family by raising busy musician, Gary rallied his musical $1000 for the Coalition, which support system to present an evening was presented to us by Lou and of great music, food, and friendship. Rosemarie. Amy’s spirit was with the event on We are so grateful to the young a snowy, blowy Saturday in January. players of the League for their efforts, Gary offered the event as a tribute to supported by your wonderful families those who had helped Amy along the and the support of their families—at way of her four years of living with home and on the field! cancer, and a donation of $788 was Irondequoit’s St. Paul Fire hosted a family day in * We apologize for a previous erroneous made to the Breast Cancer Coalition Department October, attracting families from version of this piece! as well as one to METAvivor. the area to the House to enjoy BBQ, Amy was a gift to all of us! tours, games, and information. Special FUTURE FRONT LINE NURSES T shirts commemorating the day were It was a pleasure to present to and also sold. The celebration was part of THE POWER OF PINK speak with the LPN students of SUNY a larger effort dubbed Badges Against CAMPAIGN PIC Brockport’s Nursing program at Breast Cancer. In recognition of breast cancer the REOC in downtown Rochester! awareness month, Brighton In cooperation with the Irondequoit As they perfect their clinical skills, Collectibles pays national tribute to Ambulance, Inc., Irondequoit they also seek to understand the those facing breast cancer with their Police Department, Laurelton emotional and practical challenges of month-long Power of Pink campaign. Fire Department, Point Pleasant their future patients and their families Limited edition creations of jewelry Firemen’s’ Association, Ridge Culver who will face a breast or gynecologic and accessories are offered with Fire Department, and Sea Breeze Fire diagnosis. Department, an amazing $2195.76 apportion of each sale supporting As a gesture of support for what the was raised from this and a variety of breast cancer research. Our local Coalition provides in the community, events to honor survivors in our area. Eastview Mall store direct their they made a donation of $100.

BreastCancerCoalition.org Summer 2020 • 27 FUNDRAISINGOUR FUNDRAISING FRIENDS FRIENDS

“ROC”ING THEIR SOUL IN LOCAL COMPANIES OFFERING The Gates Fire District gave us a ROCHESTER A HAND generous gift of $648 to support our programs and services. Malena and Joe Fairport tech company Eagledream Guadagnino are a Technologies is dedicated to helping Local restauranteur Ross Mueller young couple with local companies transform and owns a couple of Rochester’s hottest passion; most of all adapt to cloud technology business establishments, and is a generous passion for family, practices. They are also committed to giver within the community. Thanks, friends, fitness and supporting the Rochester community Ross, for a donation off $242 from great food. Their through charitable donations. We October cocktail specials at Native Webster business, were pleased to receive a donation and Label 7. ROC & Soul Fitness, of $101 from their Super Bowl event. Farmington trucking company gives them the Thanks! Leonard’s Express is continuing opportunity to Kudos to local attorneys and staff at their long-running campaign of A combine all of these for the good of Penny a Mile donation to the Breast the community they love. Boylan Code Attorneys at Law who raised a gift of $375 for us. Cancer Coalition from each of their On a chilly Sunday in January, they four custom-painted pink rigs. This created and hosted a “pop-up charity Our friends at Park West Women’s quarter’s road miles resulted in a dinner” to benefit our Coalition. Their Health often run morale-boosting donation of $885.80. gym was converted to a cozy Italian events in the office to raise donations venue, awash with soft pink and blue for local groups. We are grateful for light and filled with the smells of a their recent gift of $135.66 homemade Italian meal. Guests dined at cloth-covered tables, enjoying PINK friends, wine and fine food in a beautifully decorated setting. POWERHOUSE Family friend and active Coalition Her work starts volunteer Margie Micca spoke to within a couple of the crowd to share the Coalition’s weeks of finishing gratitude and her own experience her huge, thrilling, with the Coalition. exhausting event; year after year, for This magical evening resulted in an nearly 20 years . incredible gift of $2500 to our work. Thanks to this dynamic couple and Kathy O’Neill their caring community! flashes her wide smile, and it would A BENEFIT BAZAAR appear that few can say “no” when We were honored to receive the she asks for a basket, a gift card, a donation, proceeds from a booth at the Ontario tickets, autographs, small appliances, sports United Methodist Church’s November equipment. Every year, tables groan under the bazaar. Thank for your gift of $243, weight of rows and rows of tempting auction and your support! items; an equal bounty will be placed for those hardy souls who start their evening of bowling A LONG-STANDING TRADITION at 9 pm. The Churchville-Chili Saints The teams who gather each year are clearly family, to each other and with Hockey team once again Kathy. The sea of pink T shirts represents teams’ commitment to those took to the ice on the day they have loved and, in some cases, lost, to breast cancer. Survivors are after Christmas for their applauded, friends remembered. holiday tournament. Pink the Rink has been a Churchville tradition for Kathy O’Neill’s Pink Bowl is more than a fundraising event (though it is an 20 years, created in honor of hockey incredibly successful one!) It is a stunning example of one woman’s power mom Elfie Chapin who died from her to motivate and inspire the spirit of generosity and community that makes breast cancer. Warm hearts in a VERY the annual Pink Bowl so successful. cold rink celebrated another successful tournament and made a presentation Thank you Kathy and ALL who made this the largest, most fun, most of $1963 to the Coalition. successful Bowl ever. And THANK YOU for your donation of $19,000!

28 • Summer 2020 BreastCancerCoalition.org We are truly amazed at the many ways our generous donors support our work at the Coalition. Some host fundraisers among their peers on social media or in person; others donate directly through their payroll with the help of an employer and/or the United Way. And there are those who respond to our annual fund campaigns, honor a loved one with an honorary or memorial gift, or simply return the donation envelope enclosed in this newsletter. We are grateful to all donors for their valuable contributions and their commitment to our mission. Please join us in thanking the following individuals, companies, and organizations for their generous contributions between January 1 - March 31, 2020.

IN HONOR OF: My Coalition Co-Workers Sue Morgan Joan Bleecker Miriam Steinberg Betty Miller Margie & John Micca Warriors, Survivors and Those Passed On Jackie Cushman Rosemarie Morrison Odette "Tookie" Bruns Linda & James Baroody Roberta Pilato Danielle Cloud Diane Brown Michelle Jenson Jill Ball Peter D'Angelo's 11th Birthday Kathy O'Neill 18th Pink Bowl Pat Kent Quint & Chris Stiefel Laura Cardella Francis Felser Rose Standbrook Anne Marie & Christopher D'Angelo Pat Battaglia Stacia & Ryan Rush Dianne Palumbo Sarah Conners Robert & Jennifer Farrell Matthew Yawman Paulette Briskie Kate Drake Anna Young Patty Dix Christina Pearson Jane Cudahy Becky's Birthday Fundraiser Quint and Chris Stiefel Traci and Eric Cahill James & Judith Ball Marisa Bernardi Emily's Birthday Fundraiser Jan Piche Josephine DeOude Sue Collins Patricia Dorney Dawn deManincor Megan Ailsworth Mary Jane Snider Becky Herring Sarah Brainard Carin Rundle Erik Carlson Cindy Dertinger Sharon Herring Suzanne Snedecker, PhD Tracey Schulz Ryan Hoy Rohn Carlson Marissa Maenza Kate Fowler-Willson Dawn Schnell Dora DiSchino Antonietta Marseglia Maenza Emily Jane James Schnell Helen Antetomaso Janice Militello Meg Lin Margie & John Micca Janet Saile Kathy Simpson Carol Nabb Dorothy Lindsay Charlotte Passero Jen Sells Al Drew Carol & David DiGiacco Mary Prem Karen Files Sunni's Birthday Fundraiser Nancy Sanzotta Highland Hospital East5 Carol Bedient Loretta Garland Scott Trobert Lisa Maynard Gail & Darnell Garland Robin Finley JoAnna McNelis Judith Brawner Linda Carmody Muriel Gauvin Anonymous Shane Swartz Marie Candelora Bill Fortino Daniel Ross Nancy Bricker Mary Gross Maisie Gillan Dr. Vito Valenzano Joan Updaw Nancy Weinmann Leigha Kircher Bonnie Connelly Susan Bridle Mary & Richard Taglieri Jennifer Gravitz Diann Nowak Vina's Birthday Fundraiser Holly Anderson Donald Nowak Barbara Klube-Falso Karen Duncan Costantini Marcy Berger Barbara Adams Kelly Dunlap Coiro Betsy Brown Peter & Lisa Billett Brian Keenan Sara Bond Holly & Gary Warren Eileen McConville Jennifer Chamberlin Lewandowski Anonymous Kay Drury Carol's Birthday Fundraiser Danielle Lopresti Beverly & Jerry Engel Sally Cohen Margie Micca Mary Macri Debra Erickson JoAnn Deisenroth Sandy Kolupski Dawn Maier Joanne Everts Chris Fanning Henry Matheis Cheryl Marrese Shelly Gorino Carol Llewellyn James and Judy Niger Vicki & Alan Hurwitz Danielle Llewellyn Michael's Birthday Fundraiser Elena Oyer Patrick Kruchten Nicole Llewellyn Robert Brown Kimberly Platania Jean Lazeroff & Cinthia Garcia Donna Scrimale Ben Kruger Michele Scarlata Donna Lemcke Linda Shaw JW Lack Mark Webster Judith Mancuso & Laura Seymour Sue SVC Brenda Paulin Cynthia McConologue Jason Simmons Anne Wells Ellen White-Harrington Barbara Hunt Deirdre Schlehofer Jason Vinette Susan & Matt Searls Melinda Cash Kathy Simpson & Kay Merrifield Kevin Yost Michelle's Birthday Fundraiser Sandra Glanton IN MEMORY OF: Page Simpson Patti Cataldi Jenna Lynn Genevieve Agostinelli & Nancy Sue Henkel - Sherrie Sandy Kolupski Cheryl Mantia Agostinelli-Parks Valentino's birthday Megan Rinaudo Mafalda Agostinelli Choyce's Birthday Fundraiser Deborah Wagner Shaylin Cox Lisa Morabito Ruth Appleton Lynn Hunderup Kevin Yost Joan Sheremeta Charlene Connors Janet & Jack Salzer Jane Gordan Continued on next page. BreastCancerCoalition.org Summer 2020 • 29 William W. Kane Joyce Northrup Deb Bishop Gloria Gerken Mary-Ellen Kane Michelle Wright Mary Boehm Daw Gerling Bob and Bonnie Bohme Andrew Germanow Teresa Kerr Gert Palma Jason Bolt Get It Straight Orthodontics PC Peter Maushart Laura Eberstein Bowl-A-Roll Robert Giancursio Beverly Klim Ira Marie "Edith" Paris Charlene Brueggmann John Gihidiu Kimberly Prouty Eileen & William Burger Boylan Code LLP Barb Giordano Donna & Louis Buscemi Colleen Boyle Andrea Gladstone Andrea Lootens Angela & Jim Caternolo Cathy Brennan Sarah Goodman Mason Marketing Marian & Joe Coon Brighton Collectibles Maysie Goodreau Tracy Newcomb George Cooper Imani Brock Barbara Gorski Rosemary Salamone Joanne & Richard Laudisi Dolores & Arnold Brooker Great Expectations Cosignment Marietta Paris Sally Brooks Charlotte Greenwood Donna Lorenzo Bryant & Stratton Sheila Grierson Elizabeth Osta Anne Perez Rose & Jeff Piazza Colleen Brzyski Mary Gross Rita Maillie Ersilia & Alphonse Taurmina Jeanine Bush Mary Ellen & Dennis Gugliandro Thomas & Diane DiGioia Terence Zappia Heather Buske Joanne Hall Therese Donovan Nancy Cain George Healy Carol & Jerald Eckl Lori Pulver Mary Eileen & Joe Callan George Hebert Jack & Carolyn Gaffney Holly & Gary Warren JoAnn Campbell Ruth & Jeff Hedin Todd Liebert Knute Carlson Corinne Heh Kathleen Raeside Lynn Carr Warren Heilbronner Micheal & Barbara Murphy Phyllis Connelly Terry Phillips Sharon Castrichini Maureen Hellems Harol & MaryLu Roser Aurelia Ranno Patricia Cataldi Sandra Henderson Orawan Ruffo Melisande Bianchi Caton, Dlieden & Romano DDS Betsy Hennigan Scott Chamberlain Judy & Michael Henry Pat Mandina Virginia Rawa Chefs Catering of Upstate New York Kristal Herndon Paula Baum Margie Micca Dr. Peter Clement Lynn Hess Danielle Cloud John & Seana Holtz Foundation Joanne McManus Yolanda Ruggeri Pam Cohen Gail Hosking Victoria Moos Margie Micca Phyllis Connelly Patricia Iman Oscar Morales Amy Schnitzler Cornerstone Dental James Hamill Associates Staffie Morales John Rolland Fred and Cathie Costello Shelly Jeffery Holly Anderson Donna Cox Jackie and Steve Johnston Mary Mullen Mary Cowie Scott Karch Laura & Robert Mullen Allan Schroeder Todd Cranston Gladys Kime Elmer Henretta Alison and John Currie Tom Klee Carol Mulligan Mary Ellen Dangler Mary & Jack Knowles Linda Morales James W. Strine Anne A. Dasilva Tella Mary Kostiw Jordan Pepe Margaret Harris Marlene & Samuel Dattilo Beverly Kowalik Gracelyn Murphy Pauline Wasserman Barry Deane Christine Kuhn Patti Murphy Eileen Goodman Cindy DeCarlo Cheryl Kuhn Bailey Deborah DeJoy Catharine Kurz Michelle Murphy Carol Wemett Debra Delregno Nancy & Gary Kuter Family Fund William Cramer Maria Mendicino Ali Dennison Linda Lagree Lakeshore Hockey & Sports Center Cynthia Nohe Jessie Whitefield Nancy & Don Dennison LLC Judy & Jim Adamo Phyllis Connelly Bob & Debbie Dietrich Leonard Lecesse Sarah & Tony Audi Mary DiMonte Raymond F. LeChase II Caroline Bailey Jenifer Woods Jennifer Donovan LeChase Real Estate Assoc. Peggy Bailey James Woods, MD Maureen Duggan Leonard's Express Annette & Edward Cecchino Linda Dumont Sue Lessard Margie Dangler Kathleen Dutton ANNUAL FUND Carol & Gary Levy Patricia & Charles DeCarlo Michael & Carol Eagan Mitzie Lewandowski Karen Drabik Eagledream Technologies Accelerated Mailing Services Michelle Lindsay Scott Gosert Thomas and Joann Eduardo Ashley Amalfi Kathy Liszkay John Gregory Angelika Eger Amy Schnitzler Fundraiser Stephanie & Timothy Luety Maria Guarino Kelsey E. Ehrhart Betty Andelman Debra Luna James & Ruth Guderian Sharon Eichele Holly Anderson Deborah Mack Mary Henderson Ferra's Furniture Kellie Anderson Janes Magin Jane & Jim Hoffman Fetner Collision, Inc. Tom Anderson Joe Magoffin Danielle James Suzanne Flanigan Anonymous (5) Ronald Malley Linda Landstrom Bill Fortino Cynthia Atkinson Francis Marchese Jane & Thomas Nohe Pat & Carl Foucht Caroline Bailey Christine Marianccio Point Source Group Yosepha Freeman Evelyn Bailey Michael Marmo Sue & Robert Schantz Lynn Frisbee Marisa Ballatori Mr & Mrs. Douglas Marrow Judy Sinaguglia Dr. Nancy Gadziala & Rob Barton Dana Marshall Rosalie & Peter Tagliente Dr. John Looney Meg Beikirch Jennifer Gaylord Ann Martin Greg Tellex Cindy Bennett Karen Verrone Linda Gaylord Mary & Robert Bergin Genesee Valley Cremation Continued on next page.

30 • Summer 2020 BreastCancerCoalition.org Martin Engine Machine Pittsford District Teachers Sleep City IN KIND Phyllis Matthews Association SLG INC Carrie Mauro Dianne Plowman Harry Snyder Marilyn Clarke Mary Ellen Maxwell Cathy Post Larry Snyder Kathy Cunningham Linda McClain Kathy Price Radcliffe Dr.Alexander Solky Sue Flanagan Kelly McCormick-Sullivan Theresa Pudetti Spezio Property Services Karen Files Lori Meath Mark Quinzi St. Paul Boulevard Fire Association Lori Foster Joseph Mendan Rally LLC Lorraine Stavalone Linda Kingsley Susan Miller Etta & Ray Redden Michelle Steves Dawn Lee Veronica Miller Gina Redding Ed Stewart Amy Moyer Lucy & Len Miraglia Shevar Reid Robert and Judith Stewart Elizabeth Osta Jenell Mitchell Ann Reifsteck Eric & Rosemary Stoerger Sharon Rucinski Sandra Moneta Kim Riccio Elisa Subrani Webster Quilt Guild Monroe County Fire Bureau Hockey Julianne Richmond Marianna Sullivan Robyn Whittaker Ray Montanaro Lida Riedlinger Patricia Swisher Randy Morgenstein Debra Rivera Marilyn Tatner Morgenstern DeVoesick PLLC Rochester American Warriors Three Heads Brewing Elizabeth Morningstar, MD Hockey Chris Tomczak Coalition GEMs (Giving Every Month) are a special group of Margaret Morris Rochester Endodontics PLCC Susan Troiano dedicated supporters who help the Mueller Restaurant Group Rocky Mountain Barbara Unell Coalition throughout the year by Ken Mullen Lee Rosenthal Joan Updaaw making a monthly gift. Monthly gifts Lisa Mulvaney Jamie Rottger Meredith Utman offer a steady and cost-effective Sue Murray Katherine A. Rubenacker Meredith Utman source of income to the Coalition. To Music Melody Manor S&T Bank Dave Vaden become a GEM, please visit Karl Naegler Salvatore's's Pizzeria Gordon Valentine www.breastcancercoalition.org or for Corrine Nelson Tom Sardou Nancy Van Den Bergh more information, please contact us Neo-Tac Inc Mary Ann Schifitto Nancy & James Vanzetta at (585) 473-8177 or [email protected]. Margaret Newland Wendy Schneider Jenn Vaughan Mark & Rebecca Nickel Karl & Sandra Schnitzler Christine Versteeg Sharen O' Neill Kristyn Scibienski Alyssa Welch In our previous issue, we Barbara Ozminkowski Michele Sciortino Christopher Wells inadvertently misspelled the name Jim Papzissimos Tekoal Scott Elizabeth Wells of Shlonda N Nash McKnight, whose Parkwest Women's Health Carl Scripps Robyn Whittaker 50th birthday was celebrated by a PayIT Payroll Sea Breeze Volunteer Fire Paul Williams generous donation from Monika Michael Pecora Association Kathleen Willison Katzel. We regret our error and wish Kristina Pendelberry Seneca Foods Gregory and Cynthia Wise Shlonda and Monika all the best! Michael Piccolo Teresa Senrk Bob Ziobrowski Barb Pifer Richard Simmonds Judy Zydell Lisa Pilato Sirness Vending

Board of Directors: Patricia Cataldi, Chair W I S H L I S T Melisande Bianchi, Vice Chair Kathy Guglielmi, Treasurer • Dyson vacuum cleaner (new please) LEADERSHIP OPPORTUNITY Jennifer Townsend, Secretary • Burt's Bees Lip Balm (sealed, no mint) The Breast Cancer Coalition is currently Melinda Goldberg Sylvia Cappellino, Chair Emeritus • computer paper, white considering candidates for service on Phyllis Connelly, Chair Emeritus • ear plugs (individually wrapped) our Board of Directors. The Coalition Holly Anderson, President • fleece throws/blankets, lap quilts is seeking volunteers for the July 2020 cohort interested in advancing the • journals for writing Staff: mission of the Coalition via a rewarding Holly Anderson, Executive Director • lotion: Alaffia Purely Coconut lotion leadership opportunity. Service is for Pat Battaglia, Associate Program Director • note cards, notepads (bound at top) a term of two years. Details regarding Deb Bishop, Graphic Designer expectations for directors and the Ali Dennison, Program Assistant • paper products: napkins, cups for desired qualifications for service can be Jennifer Gaylord, Program Director hot and cold beverages, small and found at www.breastcancercoalition. Michelle Lindsay, Office Manager medium plates (no Styrofoam) org/people. If interested, please Lori Meath, Outreach Director • sleeping masks, lavender or unscented contact Executive Director Holly Valerie Pasquarella, Development only Anderson at [email protected]. Director • tea: black pekoe, green, herbal, and Helene Snihur, Research Administrator Thank you in advance for your interest Miriam Steinberg, Regional Services flavored, in unopened boxes or tins in supporting the Breast Cancer Director • thank-you cards (unopened packs) Coalition. Meredith Utman, Special Events Coordinator

BreastCancerCoalition.org Summer 2020 • 31 1048 University Avenue Rochester, New York 14607

RABEF Foundation

Voices of the Ribbon is published quarterly by the Breast Cancer Coalition to provide encouragement and inspiration to those facing a breast and gynecologic cancer diagnoses, their supporters, and care providers. In addition, it is intended to impart accurate, science-based information to enlighten and empower our readership. Our in-house editor, graphic designer, writers, and support staff work together to ensure our publication is economically produced and our printers assure us that we are getting the best rates possible.

All contents of Voices of the Ribbon are the sole property of the Breast Cancer Coalition, and are not to be reprinted or Tuesday, August 18, 2020 copied, in whole or in part, without the express permission of the Editor. Direct all Ridgemont Country Club inquiries to pat@BreastCancerCoalition. • Staggered tee times beginning at 7am org or phone (585) 473-8177. If you prefer • Tee times assigned in advance to receive Voices of the Ribbon via email • Curbside registration please let us know. • Box lunch & beverages provided Telephone: (585) 473-8177 • Raffles & Online Silent Auction Fax: (585) 473-7689 E-Mail: [email protected] Online at www.BreastCancerCoalition.org To keep up to date on all BCCR happenings, follow us on social media: This fall... Photo credit: Lori Kilian Photography credit: Photo ARTrageous 2020: A Whole New Affair Breast Cancer Coalition Inclusion Statement: Just as cancer does not discriminate, the Breast Cancer Coalition recognizes the importance of a culture that strives for diversity. We appreciate individual (Details to come!) differences whether color, race, religion, political viewpoints, socioeconomic status, physical abilities, gender, gender identity, gender expression, and/or sexual preference. We are committed to increasing the diversity within the Coalition and welcome you to our safe, inclusive community. Become a sponsor today! Call (585) 473-8177.