I seldom have the ability to sit and type. Ben’s Friends, TNA/ Facial Pain Assoc, all these new names and passwords. I hurt; it cannot be fixed, just diverted. I know we need a greater profile to get more funding for research. But why are we now going somewhere else for this information, this forum for discussion, this font of knowledge from our moderators? And now “at a low cost for only $50/yr.” I am on disability, thank goodness. But my health insurance costs $650/mo. If I have any extra money, it goes toward direct and complimentary treatments to help me go out in the world. This site and our previous one helped me in my darkest moments. The wind howls fiercely outside on this gorgeous cold day. It keeps me inside and afraid. But I’ll face it in a few wearing one of my dozens of face masks. But what the heck? 3 mph or 40mph, they cause pain the same amount of pain. FP community- why can’t the new site strongly suggest donations instead of locking out those who have nothing else left? A free Facebook chat? C’mon, man!
Momo,
What are you talking about, have I missed something in relation to cost?
Regards.
emphasized text
I have been muted by our web site. I was just complaining about the cost to join our new website, as this one will be no longer operating after May 1. Good bye, FPA. Too bad and good luck to you!
Do you mean it costs to join Ben’s Friends? I am in your situation as far as pain and money but I wish I could send a miracle your way to help you. In any/all events, I wish eternal blessings upon you. barbiedollstars:four_leaf_clover:
I’m blindsided here reading this. Will the moderators please step in to explain properly please
Thank you. Kristi
I have no clue what she is talking about.
TJ here I’m the community manager for Bens Friends.
The Facial Pain Association sells memberships for $50.00/year as I recall, but charges nothing to access their site. I don’t know anything about them beyond that as I have general disreagrd for advocacy associations and their paid staffs etc. WE HAVE NO ASSOCIATION WHATEVER WITH THE FPA
One of the former mods here does have association both with the FPA and several other sites if their has been contact form him looking for support of those associations we need to know ASAP and we will take immediate action. I can be very unpleasant with anyone who attempts to “use” our membership - ask any of the 25 -40 spammers we deal with on a daily basis
We have NO association with any of these associations save one for whom we operate sponsor and host a forum for their members and that is under the clear understanding its is and will be free for all.
For example The ataxia association just charged Bens Friends 500.00 for a small booth at their conference in order to make folks aware of our free services. Ben will be there for 5 days taking time from his day job and using his vacation to talk to folks about our free online peer to peer support program.
Bens Friends has never charged anything and is quite loathe to even mention we survive on donations (That and hundreds of hours of volunteer Hours from our volunteers and moderators.) FWIW your Mod Support Team has logged over 1600 hours of volunteer time saving what was on the old sites and creating the new ones. They got mostly grief in return
So if it sounds like I’m ranting, I am. Apparently someone is having a very bad day or is seriously confused.
Momo, are you getting these posts? Can you respond please, or send email to ■■■■■■■■■■■■■■■■■■■■■■■■■■
Seenie
Not sure it is any help, and unsure what Momo is talking about, but did get this email.
This site will close down on May 1st.
The Facial Pain Association offers you a new online community to share information with other patients.
In one place you can find accurate and timely information on trigeminal neuralgia and related neuropathic facial pain, as well as join our online community for support.
You can find our website at: http://fpa-support.org/
Click on the middle tab at the top of the page and it will take you to this new online community Facebook site.
Or you can go directly to the online community at: https://www.facebook.com/groups/FPAnetwork
Visit TNA Facial Pain Network at: http://facepainhelp.com/?xg_source=msg_mes_network
Think this might be adding to the topic/ confusion, or totally irrelevant.
Hi aiculsamoth, that email was sent by FPA correct?
TJ
The OP obviously got that email from FPA/TNA or whatever you call it, as I did, and is a bit confused. We all have our bad days dealing with this, plus all the mind-addling drugs.
FWIW–I was a bit disconcerted with the format of this forum at first (it is a bit odd, out of the ordinary), but once I got used to it, I have no problems with it, works fine. And I see that you moderators are excellent, put in a LOT of work, and I do REALLY appreciate how much you do for this site. THANK YOU!
It was just sent from: TNA Facial Pain Network
I might add it didn’t arrive in my email for this site, but the one used for the FPA
Well that’s a relief, at least nobody has hacked into this community! We know our new platform has been difficult for some people to learn, but it is very secure and resistant to trolls and spammers. I think we will all appreciate it more and more as time goes on.
Seenie
Hi
I have not received anything in my e-mail but I do not belong to the facial Pain association.
I think the moderators do a great job and I do not think I could have survived the last 4 months without this group.
Thank You.
I like wise received a e-mail from the FPA I was a member of them as well. It was a little confusing at first but I realized they were two different sites.
Do you mean it costs to join Ben’s Friends? I am in your situation as far as pain and money but I wish I could send a miracle your way to help you. In any/all events, I wish eternal blessings upon you. barbiedollstars