Hi Everyone - hope you are enjoying site. We set it up so folks could connect and share info and support. The network is really what you make it and it's growing really nicely. I can see lot's of love and support happening here on a daily basis.
Most of you probably know that Ben's Friends (www.bensfriends.org) runs this group and we run 34 other sites just like it. We have 80,000 patients and loved ones logging on every month to find support.
A big part of providing support and having a great network is having a few dedicated Moderators. In the early days this involves greeting people when they join and spreading the word on Facebook and blogs about the site.
Does anyone want to volunteer? We'd love to have your help. We can have another Ben's Friends Moderator train and help you out. And you can always ask me questions. :)
I’d love to do it because of my background with my own Facebook support group and tips website plus co-admin of another (I always direct people here and have the site on my links page on my website). Although I don’t think I’m quite what your looking for as with everything else going on I won’t be on as many times a day as you would probably like! :-(. Hope you find someone good!
I have been looking for a way to give something back for all of the support I have received along the way. Something giving me purpose where I have lost most. I recently have had to give up working because of my EM. The problem is I have no experience with anything like this. I very rarely even post on Facebook.I would take a great deal of training but I would be willing to put in the work. I understand if you go with someone with more experience but if I’m all you have I will be dedicated. I learn things fast so like a good dog I am trainable! Just let me know if I can be of help. I hope you find the right person. Thank you for all of your hard work.
Thanks for the nice thought Lauren. Awesome that you are giving back in other ways.
What a great note Alina. That is so wonderful of you. We can train you. We have over 200 moderators from the 35 separate networks. They work together. I'm sure Laura and I could get you up to speed quickly.
Thanks for thinking of us Lauren and also pointing people in our direction.
Alina, it’s great that you want to give back to others, it is very rewarding but sadly I’ve not been able to get on as much due to recent MS diagnosis as well as laptop breaking down, (getting it looked at this week to see if it’s repairable at reasonable price if not going to have to start some mad saving) & also working full time. I am sure you would be great, you sound like just the kind of person we need I can direct mail you some info about what it entails, nothing too difficult so am sure you will be up to speed quickly. X
That would be great! Sorry it took so long to get back. I have been checking my email because I thought Laura said she would be sending me more info there. Please I would love to help! Thank you.
Scott Orn said:
Thanks for the nice thought Lauren. Awesome that you are giving back in other ways.
What a great note Alina. That is so wonderful of you. We can train you. We have over 200 moderators from the 35 separate networks. They work together. I’m sure Laura and I could get you up to speed quickly.
Thanks Laura.
Funny(not funny ha ha) your computer just broke and I just got a new one ! Mine has been broken for months and I couldn’t afford a new one but my husbands work stopped using theirs and they are letting us have his work one cheap and only 25$ a month out of his pay check! Couldn’t of come at a better time!
lauraflora1 said:
Thanks for thinking of us Lauren and also pointing people in our direction. Alina, it's great that you want to give back to others, it is very rewarding but sadly I've not been able to get on as much due to recent MS diagnosis as well as laptop breaking down, (getting it looked at this week to see if it's repairable at reasonable price if not going to have to start some mad saving) & also working full time. I am sure you would be great, you sound like just the kind of person we need :) I can direct mail you some info about what it entails, nothing too difficult so am sure you will be up to speed quickly. X
Hi Darleen, I’ve sent you a friend request and short message but can only send a more detailed message re moderating once you’ve accepted the friend request. It’s great that you want to help out. One thing I have done to spread the word is post a link to here on social media sites for EM, either a general link or a link to discussion that might interest others.
Let me know how I can help----will do my best !! Definitely need to spread the word !!
lauraflora1 said:
Hi Darleen, I've sent you a friend request and short message but can only send a more detailed message re moderating once you've accepted the friend request. It's great that you want to help out. One thing I have done to spread the word is post a link to here on social media sites for EM, either a general link or a link to discussion that might interest others.
Only a year ago I was bordering on hysterical. I thought i was going to go mad. Isolated, incredibly frightened and desperate for help. What was ethyromelalgia - no one had ever heard of the disease!!!!!!! I remember frantically typing ethyromelalgia into google and then feeling an overwhelming sense of relief as , 'Livingwithethyromelagia' appeared on my screen - It was a Sunday aftenoon January 2013, and I had found Bens Friends! Lauraflora was the first person i ever spoke with. She was marvellous - taking the time to welcome me, facilitate information and reassure me. What a blessing- finding such a loving ,supportive and informative community . Since that day i have never felt alone,
Having been a member for a year now I would love the opportunity to 'give back' - I am so very grateful to Bens Friends for giving me a lifeline .I try to be as active as possible in terms of posting topics, discussions, sharing research etc.. but I would welcome the opportunity to do more - moderating would give me even more purpose .
As I have no moderating experience and currently dont facebook I might need lots of training . I also couldnt promise to 'moderate' daily due to my current state of health BUT (and its a real big but lol!), I am a fast learner, trustworthy ,and a very hard worker. My USP - I could also moderate your Spanish EM site as im bi-lingual
Apart from my desire to do more, I do hope other members put themselves forward and that you quickly find the people you need to keep Bens friends such a vibrant and active community .A big thank you to Ben and yourself , and all the existing moderators like Lauraflora , Alina for their selfless dedication.Good luck with the recruitment guys . I would be so honoured to be part of the team. Keep up the fantastic work all. God bless mads x
I can direct mail you some info about what it entails, nothing too difficult so am sure you will be up to speed quickly. X