Vancouver Summer Meeting Notes, 2005

Guests Grace and Dominic Macri

Over the past few years your Executive, specifically Fred Martin, has been corresponding with various Members in British Columbia who have been receiving the Foundation's newsletter. Patiently Fred has been encouraging the BC members, along with other small pockets of BEB patients throughout Canada, to get together and start their own Support Group.

This encouragement became a reality when Debbie Daniels, a patient herself, had her daughter, Heather Brown, contact the Foundation and state that they were interested in starting a local Support Group. At the same time, Helen McFadden who was also wondering about the existence of a support group contacted Fred. Realizing that there was genuine interest, Fred began corresponding with all three, Debbie, Heather and Helen at the same time so that they were aware of each other and what was being planned.

Fred then contacted the individuals in and near Vancouver to inform them that a Support Group was being formed. Those contacted said they were interested and Fred sent these names on to Heather who proceeded to contact them and advise them of her mother’s intention. If distance should become an obstacle, Helen was prepared to initiate small group meetings in her area in order to sustain the momentum. Fred began to inform Dominic of what was going on and a key decision was made. Dominic, and his wife, Grace, who had planned to attend the Annual BEB Conference in Utah, followed by a vacation in British Columbia, would attend Vancouver’s inaugural meeting, if it was okay with the group, and, if they decided to meet during that week.

The first meeting was on the evening of August 23. The meeting was held at the G. F. Strong Rehabilitation Centre and will continue to be held there for the foreseeable future. It is easy to get to by public transit and not too far away from White Rock, Coquitlam, Kristalano and other nearby suburbs. There were fourteen people in attendance.

Heather planned the meeting in detail, right down to the refreshments. She introduced both Grace and Dominic who became the guest speaker for the evening. As part of the Foundation’s Executive, Dominic expressed his excitement at being at this meeting. He went on to tell the Group that they had taken an important first step and that they would always have the Foundation’s support to help them with their growth. He went on to stress the importance of the Support Group to the members themselves and to the medical community. Within a support group patients can exchange information about their experiences with the disease and find the support required to sojourn on with this debilitating disease.

The Vancouver Support Group is, and, as they grow in numbers, will continue to be, important to the local medical community. The key to the successful treatment and eventual eradication of this disease is the vital exchange of information between the patients and the medical community. It is at these meetings that physicians who treat BEB and Meige will learn first hand from the patients how effective their treatments really are and, because not all patients at the meeting are theirs, may garner new insights on how to better treat their patients. The patients will learn from the doctors what information they should be giving back in order to help with their own treatment.

Most importantly, it is helpful just to know other people who have the same condition or who know about it, and, who can understand and support the people who have this little known disability.

In his talk, Dominic explained that the primary objectives of the Canadian BEB Foundation are helping patients to deal with BEB and Meige while educating more doctors and the public to recognize the disease and make the appropriate referrals. The Vancouver Support Group, he concluded, may rest assured that the Foundation will help them in any way it can. Furthermore, if there are other areas of the country thinking about forming a support group, please contact your Foundation as soon as possible, and, it will help you start your own group.

Grace and Dominic thanked Heather and the others for inviting them to their first meeting. Grace reiterated how important the Support Group in Toronto has been for her. She went on to say that all the patients who would attend the Vancouver Support Group would also benefit from being a part of the Group.

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