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May 12, 2016
I’m pleased to announce that I’ve set up a Facebook group that will be connected to our website. The purpose of the group is to allow us to talk about topics of importance to us, ask questions, and share information.
I’ve found 48 Facebook pages/groups related to blindness, low-vision and AMD. These include most of the big AMD organizations, and they post regularly about what’s new in research, treatments, coping skills, etc. In addition to being the administrator of the group, I’ll be checking these AMD sources regularly & I’ll share the best of their posts with our group.
Sue will not be in the group. She’s not on Facebook and isn’t interested in joining because her time is limited, but I’ll be able to pass information from her & to her.
You must have a personal Facebook page to join the group. You can still follow the website by email, and you will still get the email that I send out announcing a new page from Sue and a new blog post from me. I will share many of the Facebook ‘goodies’ we find with the email followers as I have time. The biggest advantage with Facebook, in my opinion, is that we can interact with each other. Several people have told me that they don’t know anyone else with AMD & that they feel very isolated.
The name of the Facebook group is:
Our Macular Degeneration Journey
I recommend that the first time you go to the group, use this link because there are several matches to the group name & it may be hard to find initially:
http://www.facebook.com/groups/mymacularjounal/
I’ve made it a closed group which means anyone can find it, but you need to ask to join and wait until I approve you. I know that privacy is a big concern for us all. Unfortunately, there’s no way that I can prevent others from seeing your name listed as a member in the group. If your personal page security is set properly, they can’t go to your page or see all of your info.
Part of my responsibility as a group administrator is to protect our privacy, prevent people from posting advertisements, and to make sure each one of us is treated with respect and dignity. We can agree to disagree, that’s fine. We just need to be polite about it.
You can share this Facebook group name with others. Tell them that if I don’t approve them in a timely manner to let you know. I’ll need their Facebook name. You can email me, or they can email me directly (please tell them to mention you are a follower of the website). I will also be publishing the Facebook group name on the website which means that a person doesn’t have to be an email follower to join the group.
My email address is
light2sight5153@gmail.com