Virginia Chapter
As a new support group, we haven’t discussed a name for our group. I have received calls from eastern Virginia—which is roughly six hours from Roanoke. I have no problem with arranging a meeting for 4 or 400 people. I would like to know that anyone who is interested is welcome to participate. I realize it would be impractical to send flyers to all of the active members in Virginia, and will try very hard to give you more notice regarding any upcoming meetings.
As a very new chapter, we have only had two meetings. The feeling I have about us as a group is that we all are so grateful to have someone with a similar medical problem available—as a source of information, and as a person who understands the confusion and fear that comes with having a rare disease.
Our meetings have been hard to schedule, as I have tried to contact interested patients and have asked them for a date or dates in the proposed month. I don’t get much response—so maybe my plan is not the best one. A local library offers a meeting room for a nominal fee for any nonprofit group. It is easily accessible and has worked out well for us.
I have not arranged for speakers for our past meetings, but have spoken with friends that are doctors and dieticians. They are very willing to come to a meeting and I plan to ask them to be at the next meeting. Others in the group have indicated that they could ask their doctors and feel confident they would be available.
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