How the Toronto Area Support Group Developed
The Toronto Area Support group is the oldest of the Canadian Support groups and dates back to the spring of 2001, when an email sent out to the US based ACOR list bore fruit in the shape of an email exchange.
After a number of emails five of us met face to face at Wellspring House on the grounds of Sunnybrook Hospital. We decided to meet again a few months later and to find ways to connect with more people.
The word of our existence spread and a few more people began to connect. We were slowly developing a distribution elist, and I made my phone number available. I made a flyer, added the words, You Are Not Alone, and asked if it could go on the wall in doctors’ offices. Doctors were receptive.
We started to have regular support meetings in my apartment and in libraries. In 2003 had our first conference, with about 35 attendees, at Toronto’s Inn on the Park, with Dr Shereen Ezzat organized by the late Barbara Rhodes and Sheila Logan. People would travel many miles from Eastern, Western and Northern Ontario as well as from Northern New York State for Support Meetings.
We became listed as a group on the Carcinoid Cancer Foundation website, www.carcinoid.org in 2002 and were known as the SONNY group. (Southern Ontario and Northern New York Carcinoid Support Group).
We were very pleased to be able to continue to ‘catch’ Canadians on the ACOR list. Sometime in 2003 we discovered the London Health Sciences Centre. We had already learned about different doctors at our meetings, and had compared notes, as well as telling our own stories.
Over the next couple of years, the Toronto group developed a very strong connection with the London Health Sciences Centre, and in May 2005 we held a one day conference in London featuring Dr Walter Kocha, Wendy Gillis, and Novartis rep Nathalie de Gagne. This conference was planned by Barbara Rhodes, Tom Bell and me, but by the time the conference took place Barbara had passed away, and Tom was too ill to attend. This was one of the very sad aspects of our support network and still is.
Our group grew, and continued to focus on support and information. The London Health sciences Centre in London Ontario and, Mt Sinai and Sunnybrook in Toronto Ontario told patients about the existence of our Support Network.
We patients wanted to stay in touch with one another and so we collected as much contact information as possible so we could connect as real people, not just strangers in cyberspace. Lists of names and addresses, and phone numbers were circulated, with permission, of course. In 2004 we became the Canadian Carcinoid Cancer and Nets Support Team, with a view to connecting across Canada.
We began to connect with various officers of the Canadian Cancer Society, Ontario Division. Interviews with Peter Goodhand, CEO, helped us understand the structure of the cancer world in Ontario. We learned why we had no standing with the Canadian Cancer Society. We were too small. (This has changed since the Toronto Seminar in June 2007). We began to climb over perceived hurdles in our quest to do meaningful work on behalf of our community, and to become more widely known within the Carcinoid world.
We continue to connect through an increasingly wider web, with meetings large and small, some organized as a group, but some as one or two people connecting. Some of us have made ourselves available to others on the phone.
We have a significant network now, and in spite of the fact that we are now the Carcinoid NeuroEndocrine Tumour Society Canada, with an enormous mandate, we are very much the Toronto Area Support Group, with a focus on support. Our task at this point is to have regular, perhaps monthly, support and information meetings, in a place we can call home and also connect with individuals on the phone and by email.
Maureen Coleman
Toronto Area Carcinoid NETS Group Leader.
Note: Since this was written the Toronto group has found a home at Wellspring Sunnybrook on the grounds of Sunnybrook Hospital, in Toronto.
The address is:
Wellspring Sunnybrook
2075 Bayview Avenue
Toronto Ontario M4N 3M5
Tel: 416.480.4440
Toll Free: 1.877.499.9904