This post was written by Lovett, a Moderator on Fibromyalgia Support. Lovett is one of the 200+ Volunteer Moderators on Ben's Friends Support Communities. Rather than just posting this on the Fibromyalgia site, I thought every community would benefit from this discussion. :)
Hello Everyone
As you know Ben's Friends is growing, changing, improving and asking for feedback from our dedicated member's. We have just recently shared the results of the survey that was done on how Ben Friends impacts your life, we were extremely proud of the results, and thank you to all the members who participated in the survey.
However, it did get us to wondering what we could do to make the communities even stronger. So, if you could share 2 things that you would like to see on your support group, we'd be grateful and we'll try to make them happen! You can share your ideas with us in the Comments. :)
Please feel free to give us a little detail with your suggestions. Some ideas could work for some communities and not others, that's fine. We have a wonderful group of people who all are striving for the same goal and I am sure the suggestions you will provide us with will be as exciting as all the new changes that are happening in our future.
Thanks again for taking the time to make us even stronger!
Hello Scott Orn! Well I absolutely love love love this support group i got help and guidance from when I first found out I had chiari in January this year until now. I’m 3wks postop and feel the community is wonderful and i was never alone. I have one thing that I think would be a nice addition to the community and that would be to know were others are located if they feel comfortable enough to share. I think if we knew at least a state were others are bring treated we could bring more awareness and help others find great NS that are in their area. Again I love this support group and am extremely grateful to the moderators and members take care!
I agree with Lili about the finding a Neurosurgeon. I think it would be great to put together a zip code driven Neurosurgeon directory. “We have located 3 user approved Neurosurgeons within 200 miles of you”! Reviews, profiles, the whole shebang! Also, it would be nice to have a donation program for people who are really riding the struggle bus… Money is tight for all of us, but some could really use a little extra money to get to their next doctor’s appointment, or keep the lights on at home for another month… I think it would make a great edition to this already epic forum/family.
Here’s a suggestion, we could use a list of guidelines for physical therapists. Some of them are trained in some aggressive range of motion and could do more harm then good. It would be good to have a list of suggestions we could point a physical therapist to. I have some suggestions as to where this list could come from if you want to contact me. Jeae