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Fall 2005 Volume 6, Issue 6:
IMF Around the Globe: The Greater Montreal Multiple Myeloma Support Group
By Aldo DelCol
As The Greater Montreal Multiple Myeloma Support Group approaches its first anniversary, it is encouraging to review the progress that the group has made since our first meeting in November 2004.
12.08.05

As The Greater Montreal Multiple Myeloma Support Group approaches its first anniversary, it is encouraging to review the progress that the group has made since our first meeting in November 2004.

Over three years ago, when I was diagnosed with multiple myeloma, I felt frightened and all alone. One of the first things I did was to look for a local support group. Having many questions and a thirst for knowledge, I desperately wanted to learn from other patients' experiences. Alas, no myeloma support group existed in Montreal at that time. Thankfully, the Internet led me to the International Myeloma Foundation. The IMF was the inspiration and motivation for the founding of the Greater Montreal Multiple Myeloma Support Group.

In the Fall of 2004, when I decided to take the initiative to form a myeloma support group in Montreal, serendipity stepped in to provide the necessary momentum. I knew that I needed to work with a team that possessed specific skills: communication, public relations, legal knowledge, accounting, web design and, of course, translation – remember that Montreal is a bilingual city! Through a unique set of circumstances, all these resources came together and the group quickly took shape. Our website was created thanks to the financial assistance of Ortho Biotech. The support group was incorporated as Myeloma Canada, a federal non-profit organization. We created a flyer and began to spread the word to hospitals and clinics.

The first meeting of the Greater Montreal Multiple Myeloma Support Group took place on November 2, 2004. The gathering drew fifty participants, including patients, caregivers, and healthcare professionals. Given the success of the inaugural meeting, we decided to organize a Patient & Family seminar, with the encouragement and support of the IMF. This was no small task. We had to find a venue, secure top-notch speakers, arrange for simultaneous translation, build an on-line registration site, and find a camera crew. Of course, the most challenging task was to get the members of the local myeloma community to come out in great numbers to this educational event.

When I was told that an audience of 80 people would be considered a good turnout for such a seminar, I thought this a daunting objective. But the support group members worked hard in promoting the event and, once again, serendipity came to our rescue. I received a phone call from one of Montreal's leading myeloma specialists, the head of a stem cell transplant unit, enquiring about the group and offering his assistance. He assisted us in promoting the seminar not only to the patients but also to the nursing staff and social workers at his hospital. An article in the Montreal Gazette about our support group prompted even more interest and we quickly reached the maximum occupancy of the meeting room: 150 people.

The seminar attracted people from as far as six hours away by car. The speakers covered subjects such as the basics of myeloma, coping with fatigue and depression, stem cell transplantation, and novel therapies. The faculty consisted of myeloma specialists, researchers, a symptoms management nurse, and a psychologist specializing in psychosocial oncology. Each of the speakers was associated with a university and practiced in a teaching hospital. We were also very fortunate to have Susie Novis and Dr. Brian Durie lend additional "star quality" to the seminar.

Besides the educational presentations, the seminar also offered information on the Bank On A Cure research initiative. Thanks to IMF's David Smith, plenty of "swish and rinse" kits were available and we managed to collect more than 40 samples from Canadian myeloma patients.

I am very proud of what the Greater Montreal Multiple Myeloma Support Group has been able to accomplish since its inception. Although we are still faced with the challenges of expanding the group in Montreal and across the province, as well as locating a permanent home for our meetings, we are moving forward with an ambitious plan for our second year. In addition to finalizing the speakers and topics for our group's regular meetings, we are also planning the second Montreal Patient & Family Seminar for 2006. Another objective is to mobilize the 13 support groups across Canada to come together to create a fully functional national organization to serve the particular needs of the Canadian myeloma community. Already, an agreement in principle has been reached on the structure and regional representation, and we are preparing to elect the Board of Directors and begin the task of developing a business plan.

In closing, I would like to thank the Montreal Executive Committee, whose talents and dedication were instrumental in helping make this dream a reality, as well as the entire team at the IMF whose insight and encouragement continue to sustain the dream.

Editor's Note: For more information, please visit the website at www.myelomacanada.ca or you can email Aldo DelCol at adc@videotron.ca.


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