Search Message Boards » Retinitis Pigmentosa

Please login to post a response.

New message board
Posted: 2008-10-22 20:12:47 By Jonathan R
The old board was better. This new board software is bad. Having to register again is a waste of time, and I think that this whole pointless transition has turned off some of the regulars that used to come here.

I think that we should get a USENET forum going for RP. At least then we could all make use of USENET software and bypass this crummy new forum.

Posted: 2008-10-22 21:17:57 By Maria P
The problem is that we can't always get on because the system doesn't recognize our user name. I know several that have given up on this new message board altogether and it's a shame.

Marisa

user name
Posted: 2008-10-26 01:58:49 By racer x
ya know i have noticed every time i try to log on to this board my user name is always changed so i have to go back in and edit it again...yeah i liked the old board better as well...

New Message Board
Posted: 2008-10-23 07:41:33 By Reyne K
Yes, I agree with Thomas and Marisa....The old message board was easier to navigate and one could see the responses to posts without all the flipping back and forth to see the responses. I personally have given up on the website and only check once in a while to see if anything dramatic has come up. Yes, it is totally boring!!!! There are many other websites that I go to now such as All About vision and Med Help, etc. I noticed that the questions and comments posted on this new website are few and far between. What a shame as I just really enjoyed the old format. What can we do to change it?

~Reyne

New Message Board
Posted: 2008-10-23 10:36:48 By Catherine V
I really hate this new message board. It hates my sign in name and often regects me. I really do not come here often anymore.

What was wrong with the old board.

Katie

New message board
Posted: 2008-10-24 11:32:37 By Mary O
Hello all! I agree completely. This message board is hard to navigate, harder to read and post, and not as user friendly as the other one. I called the FFB and complained but to no avail. Maybe if enough of us complain, it might change back????

New Message Board timed out?
Posted: 2008-10-25 00:22:53 By Barbara W
I just wrote a message and got a notice that my message couldn't be accessed or something and then I found I was no longer logged in. This is the third time this has happened. My message was a giant complaint about the new message board... Perhaps I "timed out" ...

NEW MESSAGE BOARD FORM LETTER
Posted: 2008-10-25 00:28:34 By Barbara W
After complaining, got a letter from FFB saying a panel of visually impaired reviewed the new website before it went online and that they are no plans to make any changes. Is there are reason FFB would NOT want the dynamic message board we had before?

New Message Board Form Letter
Posted: 2008-10-25 10:04:30 By Reyne K
Barbara,

Perhaps the visually impaired did not "use" the new board and only "viewed" it. One of my letters got deleted too, as I complained about the new board. I think this problem is a lost cause. Darran, if you are still around, I wish you could comment on this problem. You always gave us good advice and could solve some of the issues. We want to know why this website is so complicated and it edits our responses if we complain. All we need is the web admin to take the kinks out of it :-)

~Reyne

message board
Posted: 2008-10-26 02:04:22 By racer x
thomas.

yeah this board use to be more exciting...but i also think it has died because of the new format...and yeah i think alot of us are waiting for the MAJOR breakthrough because we have been on this board a while and keep reading about promising stuff that never comes about so i know for me yeah i am waiting for the MAJOR BREAKTHROUGH.

Posted: 2008-10-26 18:30:29 By racer x
Thomas,

they sure have raised alot of money for MD to no avail..and we can demand all we want, but just think of all the money these Pharmaceutical companies would lose if cures were found! i mean think of how much cancer treatment costs! and people like us well we need stuff to help us see like zoom text magnifiers bold pens canes all the vitamins were told to take and sometimes eye drops and retinal specialists..and all that purchasing would go away if we could see...they dont even have a cure for the common cold! why? cuz then all the couch drops syrups pills and all that would not be manufactured anymore therefore they would lose money...i bet jerry is living in a nice house with all those donations!!!! sure does stink for the people looking for a cure tho.

Best interest
Posted: 2008-11-05 10:51:14 By Colleen P
Hi guys,
I really do believe that they will keep working on treatments, etc. as drug companies and retinal specialists could stand to make quite a bit of money on treating patients who at present there is no treatment for.
So I wouldn't give up hope for that reason. I don't think vitamins & computer gadgets would add up to what real treatments by specialists would cost. There is money to be made here. I just think that medical research is so extremely slow I can totally understand your frustration. Hang in there. Colleen

il will be too late
Posted: 2009-02-09 10:39:32 By Lyndon B
by the time they find any kind of treatment it will be too late for us ... my retina dr. was brutally honest with me ....the bottom line is about 1% of pop. has this disease soooo in a country of 300 million thats like 30,000 in the usa... i wish this wasnt the case and i always hold out hope but i am realistic at 48 yrs old my best years of sight are behind me .... look at all the money and research goes into aids? this is a desease that is PREVENTABLE!!! but millions are pored into cures ....why??? so many people woldwide have it ...

Chapters