One of the greatest challenges facing people living with Restless Legs Syndrome (RLS) is poor diagnosis. A 2013 survey of 4,107 people living with RLS found that the average time from onset of the disease to correct diagnosis was 13.6 years, with many patients having to wait up to 20 years and visit numerous doctors before being correctly diagnosed.
The European Brain Council has started a major new project entitled: The Value of Treatment/The Cost of Non-Treatment. RLS was selected as one of the seven brain disorders for the study after the submission of an application by the European Alliance for Restless Legs Syndrome with other conditions selected including Multiple Sclerosis, Schizophrenia, Epilepsy and Parkinson's Disease. For RLS to be included with these other well-known conditions is itself a significant step but now we need to progress the RLS study.
To do so, EARLS needs to raise £15,000 and we are asking our supporters to help. This is the best opportunity we have ever had to raise awareness of RLS but we need your help to do it.
If you are in the UK, you can also donate via text:
If you you would like to help by text, simply text EARL00 (EARL, zero, zero) and the amount you would like to donate to 70070. There should be a space between the EARL00 and the amount you would like to donate.
For example, if you wanted to donate £10, you'd text:
'EARL00 £10' and send to the number 70070.
If the target is not met, this study is unlikely to go ahead so please help if you can.
Thank you!
Written by
Daragh
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Fellow RLS sufferers, please help by donating what you can. This is the best opportunity we have ever had to raise awareness of RLS. It would be very disappointing if it did not go ahead due to lack of funding.
Kaarina, my donation by phone text has been sent back to me, and it says to send it to " just text giving by Vodafone " it sounds abit suspect. Please will you clarify, then I will give my donation. Thanks Jimeka
Hi Jimeka, I donated via the link the other day and had no problem but I understand that you are not the only one that is having some kind of problem when trying to donate via text.
Would you be able to donate via the link instead? I know this works.
Thank you Kaarina, I think it has worked this time. I was putting O instead of zero,s. It's obviously sensitive. Have a good holiday Monday. Cheers Jimeka
Thank you for persevering, jimeka. I hope you have a good day too and that the weather is as pleasant as yesterday but at the moment it does not look like that will happen!
Totally agree. if there is no funding the studies do not get done! EVER. So, this seems like a GOOD chance to be studied along with these other diseases. We need so many studies done, so this is a good start.
I got it to work by text,I hadn't left a space between EARL00 and the £ sign Have done it no. PLEASE everyone know money is tight for lots of us but every little helps 70 %of RLS is Primary ( genetic ) so think of the next generation I x
Hi Pippins, thank you. Yesterday afternoon, someone on the RLS FB page was having difficulty donating via text. Daragh tried it and it does work OK. The code is EARL00 (EARL, zero, zero) and the amount e.g. £5
I think it must be easy to do something slightly incorrectly and then it will not work.
Thank you booklover for supporting us by donating and yes it is a wonderful opportunity and it would be very disappointing if the study did not go ahead due to lack of funding.
Please, please come on folks - this must be worth supporting. There are 100s, 1000s of us out there suffering - if we all gave £10 I'm sure we'd reach the target.
Managed it. But I see that only 800-odd pounds have been raised, and the target is 15 thousand. Have you contacted different branches in the US, Australia, etc. I know we've got an RLS group here in Norway, they can be contacted at post@rastlos.org.
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