Hi Members,
I hope you are enjoying the site. We're having a blast running it and seeing all the wonderful connections and support that it creates.
We're all volunteers (no one is paid here, it's a completely volunteer site and we get our $ donated to us: http://www.indiegogo.com/Bens-Friends-Builds-Support-Groups-for-Patients-With-Rare-Diseases - the Moderators are all volunteers and love doing it because they get to help thousands of people. :)
A lot of folks have asked recently if we can have people in the chat 24 hours a day. Since we don't have paid staff, we can't do that. However, the good news is that there are a ton of members globally so no matter when you are on, there are good odds that someone across the world will be on too. :)
We hope you understand our limitations. We're doing the very best we can. If you'd like to know more about us, check out www.BensFriends.org or watch this 60 second Ben's Friends movie.
Thanks,
Ben's Friends
Ben,
You've done a really good thing by started the support groups for those who have more rare diseases. It's huge. People are in such need of support and education. They don't always get this from their doctors. It's a shame. I guess we can all help one another.
Past weekend I had to go to ER. They were ruling out AVM vs Cavernoma. Luckily, so far they say it is a cavernoma that bled and needs to be monitored. After viewing your video I now know why the doctors were hoping it wasn't an AVM. You've been through alot and now are helping others. I wish you a long and healthy life
God bless you,
Allergic
Ben,
We appreciate so much that you and others have made this resource available to us AND have also given us chat capability. I think it has helped many people who have been at wits end. And you're right, with fibro people many of us ARE up late at night and into the wee hours of the morning so many times we're available for others who need someone late at night.
Many, many thanks for this wonderful resource. I honestly don't know what I would have done without it.