Elisse Zack (1952 – 2014)


Statement by the National Partners in Canada’s HIV Response

We are deeply saddened by the death of our friend and colleague Elisse Zack, founding Executive Director of the Canadian Working Group on HIV and Rehabilitation (CWGHR). Elisse passed away peacefully in Toronto on the evening of Thursday, July 31.

Elisse worked in the HIV sector for nearly two decades. Over the last 15 years, she built CWGHR from an idea into a vibrant national organization. It remains one of the few organizations of its kind in the world that actively brings together the research, training, care and advocacy work of the HIV sector and those working in other fields of disability. She believed passionately in the importance of people and organizations working together, contributing their respective expertise, to make care, treatment and support the best it could be for people living with HIV and other episodic disabilities. From the very beginning, CWGHR modelled this multi-disciplinary approach and, in doing so, made great contributions to the HIV response in Canada and beyond.

All of us were proud and pleased to partner with Elisse and with CWGHR in one way or another over the years. She was a person of great integrity and we have lost a respected colleague and ally. We extend our deep condolences to her family and friends at this time, and share their sadness.

CWGHR has announced that it will be holding a celebration of Elisse’s life at the 519 Church Street Community Centre (519 Church Street) in Toronto on Saturday, August 23, 2014 at 9:30 AM.


“Elisse grew CWGHR from a ‘one-woman show’ to the active, vibrant, well-respected organization it is now. She was the first among us to truly link with other disease groups and to bring together rehabilitation professionals with people living with HIV and AIDS, researchers and community service providers. As well as her unstinting hard work, commitment and passion, I will remember her best for her integrity. She will be dearly missed.”
– Laurie Edmiston, Executive Director, CATIE

“Meeting and working with Elisse while I was at the Toronto People With AIDS Foundation was pivotal for me in terms of direction and confidence. I recall meeting her the very first time and being somewhat in awe and quite honoured to meet the reputed Elisse Zack. I think, in fact, I was slightly intimidated. Imagine my surprise when Elisse made me feel like I was the important one as we connected and she sang my praises. I was dumbfounded. Her grace and humility, and her unending ability to encourage and support those around her, are gifts our community is so fortunate to have been given. I wish she could know just how much she shaped this man and this advocate and this proud Poz person in her last few years. I will miss her immensely.”
– Shane Patey, Executive Director, Canadian Treatment Action Council

“With integrity, decency and empathy, Elisse diligently went about making valuable and lasting contributions to improving HIV care and advancing the dignity of people living with HIV. On our last visit a couple of weeks ago, before we said what we acknowledged would be our final goodbye, I asked her what she was proud of accomplishing. Not surprisingly, given that she poured her heart and soul into it, she talked about CWGHR’s achievement in bringing together community members, providers and researchers from many different fields – and she had a right to be proud of what she built. For most of the last decade, we worked mere steps from each other in the same office, and our friendship deepened over those years as we often turned to each other for advice. I was always grateful for her insights, including those she shared during our regular dates for drinks after work. But what I treasure most is the memory of the sheer silliness and laughter we would often share, along with a plate of nachos, during those get-togethers. Then, rain or shine, she would get on her trusty bike to head home. I will miss her dearly as a colleague, a mentor and a friend.”
– Richard Elliott, Executive Director, Canadian HIV/AIDS Legal Network

“Elisse was a trail-blazer in her work, an inspiration to her friends and colleagues, and a passionate leader and advocate to the HIV community. From the moment I met Elisse, I have known her to be an energetic, inquisitive, deeply kind and generous person -always welcoming and eager to lend a hand, an ear or a shoulder. Elisse, thank you for all that you have given and all that you have shared. You have made such a significant imprint on me and on the lives of so many people. You will be deeply missed. Your passion, spirit and love for life will never be forgotten.”
– Robin Montgomery, Executive Director, Interagency Coalition on AIDS and Development

“When I first came into the movement – almost a decade ago – Elisse was there to welcome me. Elisse never questioned my motives as a newcomer to the HIV/AIDS community. She saw my dedication and commitment to learn. She provided abundant support and inspiration. As a true leader in the movement, she epitomized strength, courage and grace. Elisse always went above and beyond to cultivate relationships and partnerships that strengthened not only her organization, but also our community. As a community, we must remember our leaders and honour their work by continuing on their path. Elisse, I will always remember your compassion, your dedication, your strength and your leadership. I will let our lessons learned guide my efforts to continue in your footsteps. Thank you for all that you have done for our movement, and our community.”
– Monique Doolittle-Romas, Chief Executive Officer, Canadian AIDS Society

“As CWGHR evolved into a national pillar in the HIV and AIDS community, Elisse fearlessly led her team to the top. Presenting herself as a warrior, she was able to embody the necessary and admirable qualities of strength, courage and determination that one needs to succeed as a leader in this field. In her capacity as CWGHR’s Executive Director, Elisse provided a voice for social and human rights to vulnerable populations that often could not speak for themselves. She frequently spoke of the need to approach Aboriginal peoples and our traditions with reverence and respect, which never went unnoticed or unappreciated. I’m grateful and proud of the projects we were able to collaborate on and look forward to the work our organizations will do in the future in her honour. Her presence in our lives and the movement will be greatly missed.”
– Ken Clement, Chief Executive Officer, Canadian Aboriginal AIDS Network

“I have always admired how Elisse built CWGHR into a broad-based organization that responded to the comprehensive needs of the community she knew and understood so well. The extraordinary growth and success of CWGHR was never to build an empire. It was always, uncompromisingly, to strengthen the response to HIV and improve the quality of life for people living with HIV and AIDS. She was modest and unassuming but had a driving vision and passion that fuelled her work. In the months before I left the Interagency Coalition on AIDS and Development, we’d had a number of conversations about the national response to HIV, what the future might hold and how we should be responding to it. What struck me was how Elisse never wavered from keeping people living with HIV at the centre. What a kind, gentle, determined, smart and passionate person. Elisse, I am so sad to lose you – for myself, for your colleagues and for the movement.”

– Nicci Stein, Executive Director, The Teresa Group, and former Executive Director, Interagency Coalition on AIDS and Development

“Canada and the HIV community have lost a true champion with Elisse’s passing. She was a study in contrast: personally modest while an ardent activist on behalf people living with HIV and other episodic disabilities. We are saddened by her death but heartened by the knowledge that her legacy will endure in the lives of those touched by her work.”
– Ian Culbert, Executive Director, Canadian Public Health Association

“I was honoured to have worked with Elisse and to have been inspired by her dedication and compassion. Her passing is a terrible loss to many who struggle for human rights in Canada and around the world. Her generous and intelligent leadership will be greatly missed.”
– Joanne Csete, former Executive Director at the Canadian HIV/AIDS Legal Network, New York, NY

“Beyond her tireless work to help those in need, Elisse was a kind, honest and caring person who always had time for others. With her passing, CWGHR has lost its leader, the HIV community a dedicated champion and those who were fortunate enough to have known her have lost a great friend.”
– Andrew Matejcic, Executive Director for the Canadian Association for HIV Research

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