01-07-2006, 04:08 PM
Happy New Year to all of you and your families!
Periodically I log into discussion board to see how everyone is doing, in both their triumphs and hardships. I am disappointed everytime because there are no updates. I can see that people are logging in and viewing stories, but no one is taking a moment to update their story.
Our mission is to spread awareness about these syndromes to the world, so that we can get the ball rolling for some extensive research for the most effective treatments. It will bring more available support groups within our communities. From that point comes hope for a possible cure and maybe even prevention. The sky's the limit, as long as we all bond together and work as a team. 
The motivation to help spread awareness comes from hearing the personal stories. These stories are what makes the information they learned about the syndrome more real.
Every person on both my work and home contact lists have been sent a couple e-mails containing the SWSC website's address, along with a blurb of what they will read and learn about within the website and of the personal stories they can read about in the discussion board. I have also provided this same information in my personal web space, so that everytime someone checks out my space, they will see this information and hopefully be intrigued enough to check it out too. I'm sure everyone else who supports this website has done the same to help get the word out there. The first visit will be interesting and informative and will provide the motivation for each visitor to spread the word to their contacts too. Unfortunately, each time they visit the discussion board after that will become more and more dull because there is no new information being provided. Eventually they will just forget about SWSC all together: SWSC will be dead!
Please don't let this happen and take a moment to post your progress, and your relapses. We are all here because we care and want to do whatever we can to help. I know that there are a couple other groups out there that everyone is keeping updated, but we can't forget about the SWSC discussion board. If the discussion board dies, so does the whole website that contains all the information about the syndrome that helps inform the world and will help provide the research and other means of supporting this cause. This will only defeat our whole mission.
I hope to log into discussion board in the future and be able to read new information on how all of you are doing in your lives. You are what keeps me motivated to keep spreading the word and being a support.
Shan
Periodically I log into discussion board to see how everyone is doing, in both their triumphs and hardships. I am disappointed everytime because there are no updates. I can see that people are logging in and viewing stories, but no one is taking a moment to update their story.
Our mission is to spread awareness about these syndromes to the world, so that we can get the ball rolling for some extensive research for the most effective treatments. It will bring more available support groups within our communities. From that point comes hope for a possible cure and maybe even prevention. The sky's the limit, as long as we all bond together and work as a team. The motivation to help spread awareness comes from hearing the personal stories. These stories are what makes the information they learned about the syndrome more real.Every person on both my work and home contact lists have been sent a couple e-mails containing the SWSC website's address, along with a blurb of what they will read and learn about within the website and of the personal stories they can read about in the discussion board. I have also provided this same information in my personal web space, so that everytime someone checks out my space, they will see this information and hopefully be intrigued enough to check it out too. I'm sure everyone else who supports this website has done the same to help get the word out there. The first visit will be interesting and informative and will provide the motivation for each visitor to spread the word to their contacts too. Unfortunately, each time they visit the discussion board after that will become more and more dull because there is no new information being provided. Eventually they will just forget about SWSC all together: SWSC will be dead!
Please don't let this happen and take a moment to post your progress, and your relapses. We are all here because we care and want to do whatever we can to help. I know that there are a couple other groups out there that everyone is keeping updated, but we can't forget about the SWSC discussion board. If the discussion board dies, so does the whole website that contains all the information about the syndrome that helps inform the world and will help provide the research and other means of supporting this cause. This will only defeat our whole mission.
I hope to log into discussion board in the future and be able to read new information on how all of you are doing in your lives. You are what keeps me motivated to keep spreading the word and being a support.
Shan