Wednesday, July 11, 2012

Just What is Being Done?

A few days ago someone posted on Facebook that they were "amazed" by people trying to get money from those who suffer.  I first thought that they were talking about the "snake oil" people out there who promise a cure for RLS/WED.  Instead, this person was upset with the Foundation about several things that the Foundation has no control over.  Frustration with uneducated doctors, medications that are expensive and don't work, unnecessary testing is completely understandable but certainly not the fault of the Foundation. 

Some people seem to think that the Foundation staff and Board of Directors should have answers for every question and are personally responsible for every facet of RLS/WED--education, awareness, areas of research, new medications (or lack of them), doctors who don't care, and the list goes on and on.  All of this should be done, of course, without any expenses being incurred or asking for donations.

I realize that we all need to vent from time to time and Facebook is one area to do that.  I have done my share of ranting and will probably do more in the future.  The problem comes when a person or organization is attacked and nothing can be said that will help the attacker feel any better.  No one comes out any the better after something like this. The pain this person (and others) feel is tremendous or they wouldn't have posted to begin with.  Personally, I am still upset that this person feels so alone. 

But it did serve to point out another problem.  No one came to the defense of the Foundation, except the Foundation itself.  That leads to the question--is this what others believe?  Or is there a misconception about the Foundation?  So here is your opportunity to ask questions or post comments.  I truly want to know what your perception is of the Foundation.  I will answer questions to the best of my ability, as well as the Foundation's.

If you read this but choose not to respond, that is your right.  However, you are missing an opportunity not only to educate yourself, but to help us see where problems lie that can be corrected.  Helping us helps you!

Moon & Stars,


Anonymous said...

I have no problem with the Foundation, I have a big problem with the Drug Co that sd Requip was working great, I, also thought that but as the dosage increased so did the side effects, just sayin!

Mary said...

Maybe what people are seeing/reading is money going out but few reports about the findings. At least reports in language we can understand. I also know I was upset by the amount of time and money spent on the name change (which I was against changing) and yet you are still going by RLS. Why all that effort and then no change? One place I would like to see the foundation promote would be how RLS is presented to the public. I watched a new show on TNT named Perceptions (I think) and the comment was made that RLS is an invention of the drug companies. Does the foundation make presentations at doctor conferences and other places where doctors convene? Tell us about that. What about the foundation sending more information out in newspapers and main stream magazines. Ads that put a face to RLS instead of just drug companies. Could you produce something for PBS that is true and accurate not just "well if they would exercise and quit drinking wine" it would go away. Or have a number where we could call when we hear something like this and then the foundation follow up. People need to realize that this is so crazy because of how it affects everyone differently. Gee, this got longer than I though. Maybe that is because I actually slept last night and I can think today. I do appreciate the work of the foundation. My mother had RLS. Bless her heart, she gave it to me. Now our son is so grateful that I have passed it on to him. The foundation is doing a great job with research but maybe not such a great job on informing the world. Reading back I see this is a bit all over the place but that is what happens when I get going and cannot think about it and then put into a better order.

Donna said...

I did not see the post, or I would have been right there. Sorry, have not been on the computer much except for today the alst week or so. Was it o the FB page?

Emily said...

I did see the original post, and blocked the poster as spam. Of course, that only blocked it on my computer. Now that I see how it all turned out, I am disappointed in myself for not responding.

I do not/have not had any problems with the Foundation. In the past few days, I read (of course, I don't recall where) an "exposé" type article that the "reporting" that the Foundation is a sham run by the pharmaceutical companies and out to fleece us. I want to say that I do not believe this. But there are people who do and they have an audience. My guess is that this is what the OP was referring to.

I hate that I have to say "when" and not "if," but I will make a point to speak up and say something when this happens again.


Ruby said...

Great feed back! Mary I have already asked the Foundation to put together an income and expense document in simple language that we can use to let people see just what the Foundation is doing. All your ideas are wonderful and have been discussed many many times at Board Meetings. Our Executive Director not only goes to doctor conferences, but to the National Sleep meeting each year and we have presented at WASM which is international. However, those are expensive. No magazine, radio station or television venue will do free ads. Producing something for PBS would be tremendously expensive. See where I'm going here? It's not that we don't want to or don't see the need--it's that the money is not there. We limit what money we accept from pharma companies just because of the clueless people that say we are run by those pharma companies. Not that there is much money available from them anyway. But we could take more money which leads to more people saying bad things. Can't win.

Bottom line here is this--donations are drying up, membership is down, no grant money coming in so all we can do right now is tread water and hope for things to turn around. If it does not, there may not be a Foundation.

What the Foundation does is on their website, emails, some on this blog and some on Facebook. A lot is in the NightWalker magazine. If you have a cheap idea for us to use that will get more info out, please let us know. Many people (not you for sure!) want it spoon-fed to them and there is just not enough staff to do that.

As to the name change, it is still going on but we need to go through the official channels to finish it. There really hasn't been any cost so far and the time is from people like me who are volunteers on the Board.

My email is all over the place too, Mary! I truly appreciate all the responses. It helps me understand what the problems might be. And I am serious, any ideas or comments that will help us is wonderful!

Last, Emily and Donna--thanks for being concerned. Emily I do appreciate your support of the Foundation!


Anonymous said...

Personally, I agree with the name change as it assists with making RLS sound more legitimate, but this is only my opinion.

I was once a long time member but due to extreme changes in my life, was unable to keep up my membership. This will change soon.

I am on the Facebook page, but did not see the exchange or I would have said something. (I'm vocal like that; I did work as a co-group leader at one point and clearly recall when I first found the RLS Foundation in 1996 when I was struggling with doctors during my bout of sleep deprivation.) Your literature has assisted me through one surgery already, and may assist me through another in the near future. I'm rather partial to the Foundation; defending it is a natural reaction.

I was unaware of the articles that report the Foundation is a "sham" run by pharmaceutical companies, or that it is an "invention" of the pharma companies. If I hear anyone saying that, I'll certainly correct them; I know all my family members with RLS/WED will as well. We all suffer, though I got it worst of all.

I think it's a shame donations are drying up. I'm not sure how to assist with that other than asking membership to assist with promoting the Foundation as I have always done. Since my situation has improved, once I am settled I'll rejoin, promote, and donate once again.

I do hope situations improve.


Anonymous said...

Yes, it would be great if everyone on earth knew all about WED. But it would be even greater to have a cure. I donate to the Foundation, and I always ask that my donations be spent on research, not education (thanks to the Foundation for giving me the choice!).

Though it would be nice to have people's sympathy and understanding, I'd rather have a cure. Or at least some medication that works.

What do I think of the Foundation? How can I not love the way that some patients just like you and me got together and made a group that spearheads both awareness and research? It's a wonderful concept that seems to working well. The Foundation also provides a way for volunteers to work toward those same goals. Gosh, what's not to love?

Welcome! said...

Thanks, it is always good to hear positive feedback like this! I also like that you can specify where your donation should go. I think that awareness is essential though if we are to entice more researchers to look for a cure. It is hard to expect someone to think about doing research if they have wrong information or mindset about the severity of RLS. But we do have to have a balance and I agree, a cure is the bottom line!

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