I THINK YOU SHOULD BE CALLED ST.STEVE (SAINT STEVE) FOR BRINGING SO MANY PEOPLE TOGETHER WE WERE ALL STRANGERS WITH SOMETHING IN COMMON (VITILIGO) AND NOW WE ARE ALL FRIENDS AND THANK YOU ONCE AGAIN STEVE BECAUSE YOU STARTED SOMETHING GOOD HERE AND I HOPE THIS WEBSITE GETS BIGGER AND MORE POPULAR POSSIBLY BEING THE NUMBER ONE VITILIGO SOCIAL PAGE ON THE INTERNET
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Wishing that the Call up meet will start again, it was really nice having to hear people's voices and having a special guest at each meet-up
I have learnt quite a lot here, I have met beautiful, wonderful people from across the globe, can only wish vitiligofriends.org the very best and greater heights
Those calls never really seemed very popular, but it's easy for me to hold them and I'd be glad to do some more. I think once there is a promising breakthrough in treatment, then that will be a good time to hold some online gatherings, as we're likely to want to get good, straight, information.
I've also approached most of the formal Vitiligo groups about doing an online/virtual conference on Vitiligo, but there is competition between them and none seem too excited about a more inclusive event that all the scientists could present at and that anyone around the world could attend. This would seem to me such a hugely positive opportunity and I'd be glad to coordinate and pull off! :)
Ogo Maduewesi > Steve HargadonAugust 21, 2011 at 12:29am
Great Steve.....
I really do understand you on the Online/Virtual Conference on Vitiligo, well do know that am in anytime and will be willing to play my part to make it happen.
On the call up meet, I think people will still want to meet to feel eachother life, do we continue to wait for breakthrough in treatment, combination of things helps especially natural therapies, but persons living with Vitiligo needs to live well, healthier and be integrated back fully into the society with or without Vit, I really think that the Call meet up will help and rmb we didnt have this number of members on Vitiligo friends then.
Maybe sampling opinions through a survey or anyway you think best will help.
I'm really glad that you and others are being such positive influences on this network. In my work life, I've been building a network like this for educators that's just about to hit 25,000 members, and there are two lessons from that for us: 1) That getting thousands of people here is TOTALLY possible (and would be a great contribution to those with Vitiligo, I believe), and 2) That networks like this grow because of great members early on who catch the vision of the possibilities. So thanks to you and everyone here who are helping to make this network a place that really can help us support each other. Kudos to you!
Bamsegutt > Steve HargadonAugust 19, 2011 at 10:00pm
Dear Steve
Thank you for building this wonderful network , probably this one is the best English vitiligo forum with a lot activity and many professional members .
There are many respected big vitiligo communities …the problem is they focus on money making..by advertisements and members fee ,they force members to pay in order to write on forum.
Here we can ask what we want and get an answer from all over the world …not only from moderator or supportive member … This one is real vitiligo support group where every one share there experience and feeling freely …I love this group . Thank you again!
Yes, part of what I like about Ning (the program I use to run the site) is that it's cheap enough you don't have to have a lot of money to gather people together around a topic. I run several Ning networks for my work, and see this kind of inexpensive, grass-roots gathering as a significant part of how social media is changing how things get done in the world. You probably noticed that while there is no cost to sign up, I do keep only the front page visible until someone is signed up so that there is some privacy for our community as the issues here can be sensitive. And I do have to approve all new members because of spammers who try and come on.
My Vitiligo has gotten a lot worse in the last couple of years, and I personally really benefit from how the network reminds me that I am not alone.
Yes, he is. I don't know where i would be if i hadn't found this place. It does make it little easier on us knowing we have people to turn to that truly understands. We are all like one big distant family. :)
So, I'm having the same emotional reaction to the network. It's made me feel better about my Vitiligo, and I feel like I'm making new friends. Thanks to you, too, Amy for your good participation.
Replies
I agree this site is wonderful!!!!
And, I also have met GREAT people on here! It's too bad we can't all come together and have a pot luck!!!!!!!
It would be great to meet peeps in person!
Welldone Steve, really a wonderful initiative....
Wishing that the Call up meet will start again, it was really nice having to hear people's voices and having a special guest at each meet-up
I have learnt quite a lot here, I have met beautiful, wonderful people from across the globe, can only wish vitiligofriends.org the very best and greater heights
We appreciate you Steve.
Those calls never really seemed very popular, but it's easy for me to hold them and I'd be glad to do some more. I think once there is a promising breakthrough in treatment, then that will be a good time to hold some online gatherings, as we're likely to want to get good, straight, information.
I've also approached most of the formal Vitiligo groups about doing an online/virtual conference on Vitiligo, but there is competition between them and none seem too excited about a more inclusive event that all the scientists could present at and that anyone around the world could attend. This would seem to me such a hugely positive opportunity and I'd be glad to coordinate and pull off! :)
Great Steve.....
I really do understand you on the Online/Virtual Conference on Vitiligo, well do know that am in anytime and will be willing to play my part to make it happen.
On the call up meet, I think people will still want to meet to feel eachother life, do we continue to wait for breakthrough in treatment, combination of things helps especially natural therapies, but persons living with Vitiligo needs to live well, healthier and be integrated back fully into the society with or without Vit, I really think that the Call meet up will help and rmb we didnt have this number of members on Vitiligo friends then.
Maybe sampling opinions through a survey or anyway you think best will help.
Thanks for all you do
Dear Steve
Thank you for building this wonderful network , probably this one is the best English vitiligo forum with a lot activity and many professional members .
There are many respected big vitiligo communities …the problem is they focus on money making..by advertisements and members fee ,they force members to pay in order to write on forum.
Here we can ask what we want and get an answer from all over the world …not only from moderator or supportive member … This one is real vitiligo support group where every one share there experience and feeling freely …I love this group . Thank you again!
God bless you!
Yes, part of what I like about Ning (the program I use to run the site) is that it's cheap enough you don't have to have a lot of money to gather people together around a topic. I run several Ning networks for my work, and see this kind of inexpensive, grass-roots gathering as a significant part of how social media is changing how things get done in the world. You probably noticed that while there is no cost to sign up, I do keep only the front page visible until someone is signed up so that there is some privacy for our community as the issues here can be sensitive. And I do have to approve all new members because of spammers who try and come on.
My Vitiligo has gotten a lot worse in the last couple of years, and I personally really benefit from how the network reminds me that I am not alone.