Renewing Membership

For everything and anything else not covered in the other RLS/WED sections.
jul2873
Posts: 340
Joined: Thu Nov 15, 2012 7:32 pm

Renewing Membership

Postby jul2873 » Thu Nov 17, 2016 2:21 pm

I just got my renewal letter for my membership in the RLS Foundation, and I have to say that I am of two minds whether or not to renew. I applaud that the Foundation is sponsoring research (like the one in genetics) and I appreciate that the Foundation has spoken out in podcasts about issues like augmentation. But . . . but . . . where is the Foundation when new guidelines for opioids are published that seem to shut them down prescribing them for RLS? We've all read the horror stories here of patients who have taken them safely for years, and now can no longer get a script. I have read about too many RLS patients who are treated like addicts or criminals simply for trying to find relief from a horrible illness. Can the Foundation not get the word out to doctors that opioids are sometimes necessary for RLS treatment?

Also, many patients are finding relief with marijuana and/or kratom. Marijuana is still a schedule 1 drug, which makes it very hard to use, even if the particular state the patient is in allows it. And the DEA was very, very close to making kratom a Schedule 1 drug, and probably still will. Where is the Foundation on allowing the use of these drugs?

If there were great, safe drugs--with few side effects--already available for treating RLS I could understand the reluctance of the Foundation to investigate marijuana or kratom, or to advocate for patients who need opioids. But there really are not. There is so much suffering with this disease, and I don't see the Foundation doing enough to help.

I was amazed watching the American Kratom Association in action after the DEA announced it would be placed on Schedule 1. Senators and Congressmen were brought on board to help our cause. Marches were organised. Petitions were posted. Hearings were demanded. I am happy to join and contribute to this Organization as I see that it is working very hard for me. But I don't feel the same connection to the RLS Foundation.

Polar Bear
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Location: N. Ireland

Re: Renewing Membership

Postby Polar Bear » Thu Nov 17, 2016 10:00 pm

I am sorry you don't feel such a strong connection to the RLS Foundation.

I can't speak on behalf of the Foundation, or indeed anyone, but speaking for myself just quickly off the top of my head..... I know that the Foundation has a very small staff and believe that they are doing a great job within their limits and budget. Their budget comes from people like us who pay membership and perhaps the occasional donation. The website provides supportive documentation which is useful for many varied sets of circumstances, those who suffer with depression, those requiring surgery, or coping with augmentation. And of course they help with Research.
I'm pretty sure that the Foundation has sent out information on RLS to doctors' surgeries.
Then there are the Quality Care Centres.

But the biggie for me is that they provide this Discussion Board. I dread to think where I'd be without it. Ten years ago when I found it I was lost. I've shared happy times here, on other occasions I've ranted and raved and wept. When I was desperate all those years ago, and very often many times since, I have been so grateful to be able to log onto the Foundation Site or come here and read a few relative threads.

As a stepping stone for someone wondering if they have RLS it is a doorway to seek help, to find this Discussion Board.
This in itself is enough for me to remain a member - Ten years ago I'd have paid much much more just to have someone to talk to.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Renewing Membership

Postby Rustsmith » Thu Nov 17, 2016 10:24 pm

Please understand that the Foundation provides funds for research, they do not direct it. Research professionals around the world submit requests for funds to organizations like the Foundation, the NIH, etc. Each of these professionals has areas of expertise to work within as well as guidelines that they have to follow for their own employer.

I have spoken to the Foundation staff about a researcher in Colorado who is attempting to set up a lab to study the benefits of marijuana on RLS. Seems simple since marijuana is legal in Colorado, right? Wrong!!! The University gets federal funds and since marijuana is still illegal under federal law, any research without adhering to federal regulations would result in the loss of federal funding to EVERYONE at the university. They have therefore had to apply for a license to handle Schedule I drugs, i.e. marijuana and even though the lab has been built and is ready to go with lots of willing volunteers, they cannot do a single thing until the DEA grants that license. The Foundation is doing what they can to help, but where the feds are concerned, that help is limited.

As for opiates, both the Foundation board and the Medical Advisory board have been quite active within their own areas of influence. We the patients have not been privy to all of their actions, but they are very aware of the situation and are doing everything that they can. Part of that problem is taht RLS is a "small" disease compared to some of the others who also need opiates. They are all working together, but the DEA is focused on drug abuse deaths and apparently does not care that they are hurting those of us who needs these meds.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Renewing Membership

Postby ViewsAskew » Sat Nov 19, 2016 4:55 am

I honestly am not sure how the Foundation fights for us in some of these ways. What I support them for is the research, the education to members, and this board. There are so many ways they could work...I think it's hard for smaller org to decide how to spend those man hours and they likely cannot do everything.
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.

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Renewing Membership

Postby Rustsmith » Sat Nov 19, 2016 12:38 pm

One of the things that many of us are not aware of is the fact that the paid staff of the Foundation is about four plus one part timer. Between fundraising, selecting research projects to fund, coordinating the Medical Advisory Board, arranging for the webinars, editing the newsletter and various other patient support literature, I am amazed that they are able to accomplish as much as they do with staff that is so small. My wife was involved with the National MS Society years ago and quit because they didn't provide anywhere near the patient support that we get. They are so focused on fund raising and research funding that they were forgetting to support the existing patients.

One other point is that the Foundation recently received an award that is given to various medical non-profits for the quality of the services that they provide and the percentage of donations received that are returned to both research and patient support as opposed to administrative costs and fund raising.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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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Location: Northwest Territories, Canada

Re: Renewing Membership

Postby badnights » Thu Nov 24, 2016 11:16 am

Just thinking of the amount of effort and time that must have gone into setting up the Quality Care Center program blows me away. It was a huge and successful effort that took many volunteer and paid person-hours to accomplish. Now, even though it's hard to find doctors in many communities, we at least know that we can go to one of those QCC's and get helped by someone who knows the in's and out's of this disease. Not only that, but the existence of the program raises awareness within the medical community of the existence of the disease, and establishes it in people's minds as a serious disease, not a joke.

That's just one of the efforts the Foundation has made on our behalf. So many more, eg. organizing the research grants, preparing and publishing the brochures, supporting the Support Groups. Maybe organizing marches and stuff like that is something we can volunteer to do. Well, "we" as in someone who has the energy.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Yankiwi
Posts: 231
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Renewing Membership

Postby Yankiwi » Sat Nov 26, 2016 2:36 pm

I get so many benefits from being a member that I'm happy to support the Foundation with my membership. This forum alone is worth the price..

Polar Bear
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Location: N. Ireland

Re: Renewing Membership

Postby Polar Bear » Sat Nov 26, 2016 6:55 pm

Yankiwi, that's how I feel - just to have this discussion board as a lifeline, sounding board, somewhere to rant - and of course also somewhere to come and tell of a little good news also. :)
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Sojourner
Posts: 1653
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Re: Renewing Membership

Postby Sojourner » Sun Dec 11, 2016 9:42 am

I have learned a lot more about the Foundation just from reading this thread. I agree that this discussion board is worth the donation. A really, really, really, really, really big Foundation plus for me is that I periodically take things to my doctor i.e. articles from the Nightwalkers and she will read them as well as consider information from them in my treatment. Know for a fact that she viewed the webinar on opiates after I mentioned it to her. She considers the Foundation a reputable source of information. How much is that worth?

Wishing all who visit here some peace this night.
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