Network News - Winter 2009/2010 (PDF 3.7Mb - Canadian Breast ...

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Network News Volume 13, Number 3, Winter 2009-10 ISSN: 1481-0999 Circulation: 6,500 PUBLICATIONS MAIL AGREEMENT NO. 40028655 RETURN UNDELIVERABLE CANADIAN ADDRESSES TO CANADIAN BREAST CANCER NETWORK 602-331 COOPER ST OTTAWA ON K2P 0G5 E-mail: cbcn@cbcn.ca Network News is published by the Canadian Breast Cancer Network (CBCN) to provide the breast cancer community with up-to-date and understandable information on issues at the national level, to promote education and awareness, and to highlight the concerns of Canadians affected by breast cancer. We would like to thank the individuals who wrote articles and the breast cancer support groups that provided information. We welcome your ideas, contributions and letters, subject to editing and available space. The articles in this issue do not necessarily represent the views of CBCN but are the opinions of the authors. CBCN gives permission to copy with attribution. Canadian Breast Cancer Network, 331 Cooper Street, Suite 300, Ottawa, ON K2P 0G5. Tel.: (613) 230-3044. 1-800-685-8820. Fax: (613) 230-4424. E-mail: cbcn@cbcn.ca. Website: www.cbcn.ca. Editor: Jackie Manthorne Editorial Committee: Mona Forrest, Jackie Manthorne Contributors: Diana Ermel; Jackie Manthorne; Mona Forrest; Carol Ann Cole; Liz Whamond; Eleanor Nielsen; Nina Burford Translation: Martin Dufresne; Julian Zapata Rojas; Reine Daas; Véronique Lacroix Cover Photo: The Canadian Breast Cancer Network Board of Directors at the CBCN National Conference for Young Women Living with Breast Cancer, November 2007 President’s Report By Diana Ermel, Past President This issue of Network News is dedicated to celebrating the 15 th anniversary of the Canadian Breast Cancer Network and remembering its history. It also marks the last opportunity to share my thoughts and reflections with you. At the October Annual General Meeting of the CBCN, Cathy Ammendolea became president of CBCN. I want to thank her for taking over this responsibility and I know she will be an amazing President. Diana Ermel President of the Canadian Breast Cancer Network As you read this newsletter you will hear the history of CBCN from many different perspectives. My memories are of events and people. I remember the names of some and of others, only faces or impressions. So this message will be about some of the people I remember and my perceptions of the beginnings of CBCN. In the Fall 2007 Network News, I wrote about the 1993 Montreal National Forum on Breast Cancer. It was a watershed event that resulted in the commitment of the various breast cancer stakeholders, including people diagnosed with breast cancer, to work in collaboration and partnership to deal with the many issues related to breast cancer. I recall a very exuberant scientist explaining that we were “this” close to identifying the gene involved in breast cancer. I remember a woman sharing that this was the first time she had talked to a physician as an equal, with her clothes on. I don’t remember there being any focus on the particular issues of men, young women or lesbians who were diagnosed with breast cancer. We have come a long way in understanding the science and diversity of breast cancer. One theme of the Montreal Forum was Support Advocacy and Networking (SAN). Pat Kelly and Sharon Batt co-chaired those sessions. I remember two incredibly articulate and strong women who today continue to work in their very different ways and directions with the same goal: to see the end to this disease and its debilitating effects. I met many strong women at the Forum. Liz Whamond and Ninon Bourque, both future leaders of CBCN, were there. Liz and I had met on-line prior to the Forum, not a common occurrence 16 years ago. Liz continues to advocate for the patient voice as the co-chair of the Canadian Cancer Action Network. Ninon and I bonded over the Bernie Seigel books – books that taught us we weren’t victims. I met wonderful women from across Saskatchewan and we went home and founded the Breast Cancer Action Saskatchewan. We wanted to carry on the momentum we experienced at the Forum. Photos: Jackie Manthorne; Mona Forrest; Soesi Atantri Layout: MoreInTypo Ltd & Design Printing: Bonanza Printing Staff: Jackie Manthorne, Executive Director, jmanthorne@cbcn.ca; Mona Forrest, Director of Development, mforrest@cbcn.ca; Jenn McNeil, Project Coordinator, jmcneil@cbcn. ca; Colleen Lyle, Communications Manager, clyle@cbcn.ca; Maureen Kelly, Receptionist, maureen@cbcnc.ca; Judy Proulx, Receptionist, jproulx@cbcn.ca; Sandie Lessard, Bookkeeper, sandie@cbcn.ca and Sparrow McGowan, Web Site Coordinator, smcgowan@cbcn.ca In this issue: Executive Director’s Report................ 4 Class of 1993 and Birth of the Canadian Breast Cancer Network .................. 6 Christmas Appeal...................... 7 Memories of CBCN..................... 7 The Friendships that CBCN Helps to Create, Carol Ann Cole........................ 8 Profile of a Director, Nina Burford.......... 10 Recurrence #1 Concern for Women with Breast Cancer. ...................... 11 Bust a Move for Breast Health in Nova Scotia . 12 CBCN Photo Gallery ................... 14 CBCN Honor Roll of Friends Remembered.... 16 Richard Robinson :”Bringing Sexy Back ..... 21 Early CBCN Media. ................... 22 Mammography Controversy …Again. ...... 23 Thank you 2009 Auction Donors.......... 25 Breast Cancer Survivor to Financial Survivor .. 26 Members, Friends, Corporate Support....... 27 CBCN Network Partners................. 28 2 Network News Winter 2009-10
The people involved in the SAN extended an invitation to anyone interested in seeing the formation of a national network of breast cancer survivors to meet for coffee and doughnuts. The meeting wasn’t an official part of the agenda. It had been organized during the only available time, somewhere around 7 AM on the second or third day of the conference. I remember someone telling me they had hoped for at least 30 people to attend, 60 at the maximum. There was standing room only. I think every woman diagnosed with breast cancer at the Forum was in attendance. The energy and enthusiasm was contagious; a national network would give us a national voice and connect us across the country. Participants volunteered to represent different parts of the country. Mary Drover represented Saskatchewan and was one of the first co-chairs of CBCN. This was the initial conception of the Canadian Breast Cancer Network, and with the support of the amazing people who worked at Health Canada’s Canadian Breast Cancer Initiative, the Network was officially launched the following November in Toronto. I was also privileged to attend the founding meeting of CBCN and to be inspired by the very committed women who knew that this disease was far too common to be kept hidden and discussed in hushed tones. It was a visioning workshop dedicated to setting goals and determining future direction. What would CBCN be? How would it link people across Canada who were affected by breast cancer? Once again the energy was amazing. CBCN would be advocacy at its best, giving legitimate voice to people diagnosed with breast cancer. The CBCN logo was officially adopted at that meeting. The “dancing lady” logo had been designed by the nephew of one of the Health Canada staff. One of my strongest memories from those two days is hearing Carol Spiro, the president of Breast Cancer Action Ottawa, speak. She told her story and powerfully expressed her CBCN Board of Directors, November 2007 vision of the change that was needed. I met Dianna Schreuer, immediate past president of CBCN and Eva Bereti, a past Board member, at the founding meeting. Finally, I remember towards the end of the founding workshop noticing two women sitting on the sidelines who, for years, had lobbied for a national movement of breast cancer survivors. They were just soaking it all in. And so the CBCN journey began. Through the years I remained attuned to CBCN. I continued to meet up with Eva Bereti at other breast cancer events, and my admiration for her commitment to her values and principles grew every time I was in her presence. Eva is the embodiment of strength and humility. Today she remains a strong voice for Aboriginal women and women diagnosed with breast cancer. I met Dianna Schreuer again when I joined the Board of CBCN in 2005 and was able to witness the growth of CBCN under her leadership. Another CBCN past president with whom I had the honour of working was Karen DeKonig. We were on a committee to ensure the ongoing federal funding for the Canadian Breast Cancer Initiative and breast cancer research in particular. Advocating on behalf of breast cancer research remains one of my passions. We need the highest quality research based on a collaborative and comprehensive national breast cancer research framework that eliminates redundancies and is collaboratively funded. As President of the Breast Cancer Action Saskatchewan, I was invited to participate in a number of national meetings. At a meeting ten years ago, I met Jackie Manthorne, the brand new Executive Director of CBCN. Over the past ten years Jackie has shepherded the Network through many ups and downs and brought many inspirational ideas to fruition. During my tenure as President of CBCN, the three contributions (among hundreds) that stand out have been her diligence in almost single handedly keeping CBCN afloat during times of financial drought, the highly successful launch of the Breast Cancer Wait Times report card, and bringing to life the vision from the Young Women’s Consultation of having a conference dedicated to the issues faced by young women diagnosed with breast cancer. Those of us who have been lucky enough to work with Jackie know how much she has given to CBCN. We know that CBCN would not be where it is today without her. We honour Jackie and thank her most sincerely for her commitment and compassion. We are not only celebrating 15 years of CBCN, we are celebrating Jackie’s 10 th anniversary as Executive Director of CBCN. • Network News Winter 2009-10 3
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