Susan M. Cohen, beloved Chair of the New York State Breast Cancer Network, died on December 22, 2010. She was 69 years old.
Susan co-founded the Network with a small group of other New York State breast cancer survivor power-houses in 1998. For the past twelve years she has been our leader, our teacher, and our inspiration.
In 1998 Susan had already logged many years as a New York City housing advocate and lawyer for low-income people. She came with her community-building and advocacy skills well-honed. There was no need for learning on the job: from the beginning Susan knew where the Network needed to go and how we could get there.
Not to say that it was easy. We are the only statewide Network of free-standing, survivor-driven, community based, breast cancer organizations in the country. Our members are organizations, not individuals. Our member organizations manage and promote Network activities through their own chosen delegates, a group of passionate, strong-willed, opinionated community leaders. These delegates represent their own local groups which are from different areas of the state, have different populations, different organizational approaches, and often different priorities in the struggle against breast cancer. When we began in 1998, our member organizations were also competing for the few, private foundation grants available for community-based breast cancer organizations. It would have been easy for us to implode into disarray and competition. Susan had another idea.
Susan believed in her core that our differences could become our strength. Although we could argue fiercely about whether access to quality care, direct support services, or primary prevention/environment was the most important focus, she knew that if we stepped back and took a breath, we would agree that they were all important. Many of our groups could only focus on one priority or the other because we were small, under-funded, volunteer-based organizations that were working hard each day just to keep our doors open, and we could not do it all. Susan knew that as a Network, we could.
So Susan went on to design a structure that was just loosely knit enough to encompass our differences, but tight enough to be a unified, strong voice in public policy decisions in Albany. She helped us change our potentially divisive differences into a sharing of expertise: we agreed to support each other’s priorities and could finally do so because we didn’t have to become experts in every aspect of the breast cancer movement. Instead, we could depend on each other’s expertise. If the focus of our individual group was, for example, direct support services, we could still take a stand on important environmental issues affecting breast cancer because we now had our sister organizations with that focus to guide us to the most relevant issues and the best legislation. It was a brilliant design and it works.
Twelve years later we are still a loud, opinionated, unwieldy group managing this Network, and now we are also grief-stricken. But we are deeply committed to each other and to the mission of the Network. Susan left us with the history and the heart to continue our work, and that is what we will do. In Susan’s memory, in Susan’s honor.
Susan was a tireless advocate, often interviewing legal clients after midnight hours, and composing the Network.s memos of support and other Advocacy Day materials until the early morning hours. She excelled at writing, strategic thinking and negotiating with advocates and state lawmakers. Despite putting in long hours organizing Advocacy Day, and leading NYSBCN annual meetings the day before, Susan was able, with the help of multiple cups of coffee, to moderate the intense day-long events of twelve Advocacy Days and lead SHARE.s legislative visits with boundless energy, focus and grace under pressure.
Susan, together with other Network board members, spearheaded important legislation, including: establishing the Survivors Support Initiative that awards state funds through a grant application process to community-based groups that provide crucial services to breast cancer survivors, their families and caregivers; adding breast cancer survivors as voting members to the NYS Health Research Science Board (HRSB) that oversees the NYS Pesticide Registry and awards breast cancer education and research grants; banning the hazardous chemical BPA from children.s products; and expanding the Breast and Cervical Cancer Treatment Program by extending Medicaid coverage for treatments. She became an advocate on the HRSB; she was an active member and volunteer of SHARE in NYC; and a member of the National Breast Cancer Coalition. In 2010, Susan received the New York State Woman of Distinction Award from the NYS Legislature.
It wasn.t only her well-honed community-building and advocacy skills that Susan shared with us. She had many interests – reading, listening to chamber music, and traveling to cold climates among them. Each year we looked forward to viewing her photographs of trips taken to Alaska or Antarctica where she delighted in viewing polar bears, seals, penguins and other wildlife, especially those whose habitats were threatened. In keeping with her vocation as a lawyer she was always concerned with justice – both environmental justice and social justice issues.
As the Network’s Executive Committee said, Susan left us with the history, the heart and drive to continue our mission, and that is what we will do. We at CRAAB! are deeply saddened by her passing, but Susan will continue to be an inspiration for us all.
by Margaret Roberts on January 03, 2011
I have been hearing her voice as loud now as ever before…”Did you buy the heavy cream?” Wake me up twice, first time the warning wait 15 minutes then make sure I get up!” “I always drink my mushroom brew before I start my day.” “I’ll call you right back, let me heat my coffee” “No no no don’t send it out…let me see it first.” “Got to run, I’ve got a concert tonight.” “Mozart Week, let me know EARLY what tickets you want.” “I’ll bring photos of latest trip. Please keep my pictures, in order.” “I know, I promise I’ll go home early.” These are but a few. Please share with all of us Susan’s voice…..karen
by karen miller on January 04, 2011
So glad we can share this site about reflections of Susan. I think she was brilliant and a sister warrior who I will greatly miss, especially as we move closer to our 2011 Advocacy Day planning.
As challenging as it was when I first began working with Susan, I got used to and expected my writing pieces to be chopped up and changed to the point that I didn’t recognize the original writing I had submitted. It was a joke among all of us, and I just went hysterical when Roberta said at Susan’s funeral that Susan insisted on editing her own obituary. She was consistent and so predictable which after time made it easy to work with her.
I was in awe of Susan when Karen and I had visited a legislative rep.to discuss which BPA bill should be endorsed. Susan was an admirable no-nonsense person who said to the legislative rep, “Now we have to cut to the chase on which BPA bill you should be backing up.”, and the legislative rep said “I better call my assistant in Albany before another word is spoken.” Susan meant business and made the BPA legislation that passed happen! I was so proud of her running around with me and Karen about the BPA bill since Susan’s usual focus was not environmental issues, but she became a champion on the subject.
Loved her photo expeditions and her thrill of untouched nature and the wild was contagious. She was so brave to get that close to those polar bears!
And a humorous story was when Karen and I went to a diner with Susan this past Spring, she said to me, “Please don’t say anything about the hamburger that I’m about to order.” Loved her direct style!
It’s going to be especially hard to work Advocacy Day this year without Susan, but I’m sure that she’ll be close by watching us every step of the way.
Love you, Sister Warrior!
by Laura Weinberg on January 04, 2011
It is such a comfort to read other people’s thoughts about Susan. Working with Susan and being her friend was a unique experience and I definitely feel the need to remember, share, and be grateful for these last 12 years when Susan was in my life. We worked together almost daily running the NYS Breast Cancer Network, and our telephone conversations, which, because we both had odd sleep patterns, were often between 4am and 6am, covered a lot of ground. Susan became a very close friend. She was a mentor and a partner in our work. Susan was, as everyone has said, very good at what she did. Susan was also an extraordinarily gentle person who had a devotion to justice as passionate as any I have ever seen. Whatever the issue or the endeavor, Susan was always seeking the fairest, most just result. Seeking justice is what propelled her. And where some may have to think long and hard about where the path to justice is, Susan always saw it immediately and her focus on it never wavered. What a teacher and a guide she has been. What a lovely, gentle, amazing spirit she will always be in my life.
by Andi Gladstone on January 08, 2011