Time: 12:30pm to 3pm EST
Join Zoom Meeting: https://us02web.zoom.us/j/83415121419?pwd=MFgxUWtMU1VWcURodHU0NkFJanNvQT09
Meeting ID: 834 1512 1419
Phone: +1 301 715 8592 US (Washington DC)
Topic: Hello to TMA members living along Florida’s east coast, south of the Jacksonville area.
The Myositis Association has a long history of supporting patients and their families through groups often called KITs (which stands for keeping in touch). There is currently a very large and active group in the area south of Tampa, called the SW FL group. There is also a group that meets in the Jacksonville area and one in the panhandle. In the past, there have been attempts to start groups in the Orlando, Miami and Stuart areas. However, none have become self-sustaining and we’d like to see that change. To quote a study: Support groups have been shown in many studies to improve outcomes for members; knowing they are not alone, that they have some control over their lives and providing increased optimism!
Please consider what this could mean for you:
- opportunities for you and your caregiver to share experiences and knowledge
- a chance to learn more about your disease
- a renewed sense of positive outlook
So this is your chance to improve YOUR outcomes and to join others in the Florida east coast myositis community. Even if you do not think you are interested, please plan to participate; it might be enlightening. This meeting will be completely via Zoom.
A bit about this initial meeting. First, you are asked to RSVP so we can gauge the level of interest out there. Second, we can get an idea of where the positive responses are located. Third, we can plan for the content of the meeting, including breakout groups. Finally a bit about the leader of the meeting and who will receive your responses.
Marianne Moyer is one of the co-leaders of the SW FL group and has been for 14 years. She is currently a member of TMA’s board of directors and she’s had myositis for over 20 years. She plans to hold this meeting for up to 50 respondents. (This email is being sent to over 100 FL TMA members.) If there are more, we will schedule an additional meeting. This first meeting will consist of identifying members and their locales, guidelines of what to expect of a support group, and a presentation targeted to all myositis patients and caregivers. It is important to note that we will also be offering opportunities for members like you to assist in the formation of the groups. There are also already two other people interested in helping in this new effort.
Hoping to hear from you no later than Friday April 16. Please reply to marianne.moyer@verizon.net.