How to find??

Anything on your mind that isn't about RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
ViewsAskew
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Post by ViewsAskew »

Polar Bear wrote:Ann - not quite sure what you mean by conducting a review, but just set me on the right track etc. .....


A review of this nature means:

1. Identifying the top 5 (or so) things people want to do when they use the website. In our case, it might be things like:

-Join the organization
-Learn more about the disease
-Donate to the organization
-Find contact information about the organization
-Identify the resources of the organization that I can use
-Use the resources that are on the website (discussion board, online community, etc).

(I'm guessing - it would be part of what we did to agree on these critical 5-7 tasks)

2. Working by ourselves, each of us would then try to perform each of these tasks on the website. We'd be guided by a form that was already created. When anything wasn't easy to do, we'd note it.

3. Compare our results - were there things that all of us had a hard time doing, for example?

4. Make recommendations.


Does that make more sense?
Ann - Take what you need, leave the rest

Managing Your RLS

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ViewsAskew
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Post by ViewsAskew »

Rubyslipper wrote:I think that would be a great idea. As one person pointed out, when you are sleep deprived anyway, the slightest problem becomes overwhelming. If it doesn't come easy, they just may give up.

The mission statement for the Foundation is to increase awareness, improve treatments, and through research, find a cure for RLS. As another person pointed out--it doesn't say anything about support. Yes, we have support group leaders, the discussion board and now facebook but it doesn't seem that they are getting the work done. So I feel we need to find out why and how we can make them better.

The second biggest problem we face right now are the people who want help, want it NOW but don't want to do anything to make it come about. They don't want to look or read, they don't want to help, they don't want to donate, they just want to complain that nothing is being done. I realize that most of those people will continue to complain no matter what we do but from those people we also find out what isn't working. Like making the discussion board easier to find and join.

So yes, I will be glad to work with anyone to address the problems we have. I also want to know about other problems and any ideas on how to fix them. There are some great minds out there and we can use all the help we can get!


It's fascinating that our mission doesn't include support.

I think that many of us are willing to do something to help ourselves. Maybe what happens is that we only hear from those who complain and don't do anything to help themselves. My guess is that anyone who's a member here tried to help themselves, because otherwise we'd have no members!

But, that small vocal group can make you feel that no matter what you do it's not good enough. And, when those of us that are helped - like many of us here - don't share our appreciation, it's hard to feel any love!

I had a boss when I first got out of college that helped me more than he'll ever know. He had an iron-clad rule. You were NEVER allowed to complain if you hadn't thought of a solution and weren't willing to help solve the problem - no matter where the problem originated. I've often thought that if all of us followed that rule, we'd A) get more done, and B) have nothing to talk about, at least at first. :-).
Ann - Take what you need, leave the rest

Managing Your RLS

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doety
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Post by doety »

Hi Ann: I love that rule!! We all ought to use it.

I can only imagine what the meeting was like when the uses for the website came up. I've been in on "mission statement" meetings and was stunned that they were so difficult.

I'm picturing someone jumping up and down, miserable, about to jump out the window, feeling like they were the only ones in the world with this strange condition. Someone tells them the name -- restless legs (at least, back then), so if they can sit down long enough, they Google it.

The last thing that person wants to do (in my opinion) is join some organization or think about donating to it. I also don't think I would want contact information. I WOULD WANT HELP. Quickly. It would be nice to have a description of the disorder and all the options available.

We might like for them to join and donate, but their physical condition is probably uppermost right then. If we're really trying to serve our public, being able to talk with others who are afflicted would seem at the top of the list. When I got my hips replaced, I don't think I could have done it without an online group facing the same thing, all of us terrified. We got so close that several people having the same surgery on the same day, made their spouses come home and e-mail the rest of us to say we were okay. We stayed close for a year.

As we get on the discussion board, we bond. We reach out to new people and others we've gotten to know. I believe that's what builds the strength of the organization. I think I'm a pretty typical user and I rarely go any other place.

I'll be so happy to help.

Rubyslipper
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Post by Rubyslipper »

Views, let me know what you and the other moderators need to make this board more accessible. I try to steer people this way when they need more in-depth info and support than they get on facebook. If we put it out for a way to help, we have to maintain it and keep it usable.

As for what I do? Believe me, every person who has any input, ideas, constructive criticism or support that will help someone else is a hero in my book. That includes all of you on here.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Rubyslipper
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Post by Rubyslipper »

Sorry, posted that last before I realized we went to two pages! I think support should be our first priority. I realize we need education, research, donations, etc. but our first need is for support. The discussion board is a great start. Support group leaders and meetings are great in some areas and almost useless in others. I do NOT mean that they don't try--people just don't use them for help. Where they work, they need good support from the Foundation to keep up the good work. If someone wants to become a leader, they need support themselves and training. When it isn't working, then cut it lose and try something else.

So, to promote this discussion board, what do we need first, second and so on? You all know more than I do about what is needed. I can't promise anything but I can put a bug in several ears and see what we can get done. I just need a list. Views, you started this on that conference call we had. Can you retell me so I can take it to the board if nothing is done before the BOD meeting?

What can we do to make the website more attractive and useful? Those are programs already in place that I might be able to get funding for. Again, no promises but I can't imagine why anyone would object to changes for the better.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

doety
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Post by doety »

Ann: I'm getting ready to fly to L.A. I don't have time to really study the website. I just wish "Discussion Group" or "email with others who have RLS" could be put somewhere prominently.

I won't have a laptop; will be in touch when I return.

Rubyslipper
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Post by Rubyslipper »

Views, I like your idea for reviewing different areas. I think it might be good if each of us (or whomever wanted to help) looked at each of the areas you posted and give ideas on making it better. I might miss something on an area where I take too much for granted that someone else might pick up.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Chipmunk
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Post by Chipmunk »

I'll chime in as someone relatively new: I found it immensely frustrating that there was not a link from the main RLS.org site, or if there was, I could never find it. FWIW, I always looked under support groups. I went back to my registration email all the time to find the address, until I eventually remembered to bookmark it.
Tracy

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ViewsAskew
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Post by ViewsAskew »

If anyone wants to go this kind of a review with me, send me a PM. Maybe we can have a conference call in the next week and discuss how to use the review tool I have. We can agree on the 6-7 tasks that each of us will try, then we will try them, then get back together to discuss our results.

Shoot, Ruby, I hope I remember what I said during the call, lol. I'll get with the other mods privately and see what we can come up with and will email you a list.

I appreciate, tremendously, your dedication to everyone with RLS. We're lucky to have you.

Image
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Post by Polar Bear »

I agree that the top of the list should be support and an easily found link to the discussion board would be brilliant.

A case of - approaching the RLS Foundation page like a newcomer and seeing how clear and simple the navigation is or is not.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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Rubyslipper
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Post by Rubyslipper »

I think we have a plan! Good deal!
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Polar Bear
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Post by Polar Bear »

A speedy link from the RLS Face Book page would be good, as well as from the RLS Foundation site.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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ViewsAskew
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Post by ViewsAskew »

Polar Bear wrote:A speedy link from the RLS Face Book page would be good, as well as from the RLS Foundation site.


Very important!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Post by badnights »

As I've said elsewhere, making that one change to the website - putting a link to the Discussion Board under the first tab, and re-naming that tab - would go a long way toward helping people find us. That is a DEAD simple fix, and in a different league than upgrading the version of bulletin board software that we use, so it should be addressed separately and first.

Upgrading the software is the next most critical thing. It will make the registration process easier, removing the last obstacles to the average user being able to find us.

Ann and I could do both things (with help that we could round up on our own) IF we had access to the server and communication with the ISP.
Beth - Wishing you a restful sleep tonight
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Rubyslipper
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Post by Rubyslipper »

I would like to ask permission from those who have posted on this thread to take the comments (not who they were from), print them out and take it to the board meeting in November. I will also lift some from facebook if possible. I want to show that it isn't just me, it's many people who think this is a problem. If you would rather I didn't, just tell me and I will delete your comments.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

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