RLS Foundation (U.S.)

[grampus]

I've dealt with RLS for about 25 years but am new to this website. I've found the RLS Foundation websites (rls.org; rlsfoundation.blogspot.com) and publications very helpful over the years. I have no connection with the RLS Foundation (RLSF) other than my $35 annual membership fee. I tried to search out references to RLSF here but am still learning how to effectively search and found only a few references. Please excuse me if I am duplicating info you already know.

RLSF publishes a useful quarterly update (" Nightwalkers") . Spring 2019 included articles on augmentation treatment (promising study with the drug ecopipam); methadone treatment; RLS triggers, and; medical cannibas and RLS. They host free webinars ...next ones are June 20, 3:00 PM Eastern Time on "Medications for RLS" and July 15, 3:30 ET on "Basic RLS Pathophysiology." The website has further details and registration info.

I found the posts and info here very valuable and hope I can return the favor.

Grampus

[Joolsg]

Thanks Grampus. I joined the US foundation and have found the free webinars very useful. I have also printed off the useful articles on Iron to show to my English haematologist in the hope of persuading her to give me an infusion.

There is a lot of very helpful information but I suspect many people don’t want to pay the $35 p.a.

That could be because the UK site is free and our healthcare is free so it’s just a little alien to us.

However, I think it’s money well spent and most of us spend money on supplements and weird and wonderful contraptions which don’t actually help very much.

Hope you enjoy the site- welcome.

[Nottsali in reply to Joolsg]

Do they make the webinars available afterwards, just thinking of time differences

[Joolsg in reply to Nottsali]

Yes- you can sign into the website and watch whenever it suits you. You can register for the live webinars and submit questions and it is great to have world experts answer them. Dr Winkleman and Dr Ondo are regular speakers.

[Nottsali in reply to Joolsg]

Great, thanks Jools, after I’d posted that question I realised the irony of asking about time differences when I’m likely to be awake in the middle of the night anyway 🙂

[Joolsg in reply to Nottsali]

Strangely, they tend to have most at around noon New York Time which means it's 5pm UK time. I think the doctors talk during their lunch breaks. I'm off to try to get some sleep now, fingers crossed.

[Parminter]

I agree, the RLS Foundation is very fine - and our money goes to research, which I like.

One of the current research topics is a drug to prevent augmentation by dopamine agonists (by Doctor Ondo?), and success would be wonderful.

Have you used their forum at all? They are a well-informed group, but I prefer this one, which is much more user-friendly and vastly better designed . And it has some really smart members.

[byrnzy4 in reply to Parminter]

I belong to RLS foundation as I am in the U.S., and find the online seminars very helpful. I've submitted a question for the one tomorrow on June 20th.

[Parminter in reply to byrnzy4]

They are wonderful, I agree.

And so often, with this difficult condition, we think there is nothing we can do - but we can pay a membership and help to solve the problems.