It is now one year since this forum was established and we currently have 851 members, which I'm sure you would agree is great news. While it's unfortunate that we even need this forum (due to the lack of awareness of RLS and a cure for the condition) it is good that we have this space where we can share information.
Of the 851 registered forum users, only a small proportion of you have joined our charity. This of course is your perogative but it poses significant challenges when we (RLS-UK) are liasing with organisations etc.
We need charity members in order to add weight to our argument. Yesterday we wrote to various organisations asking them to write about RLS or to televise something on RLS. We would love to have been able to say that we have under xxx members, but we couldn't. In fact we try not to say how many fully paid members we have (under 200). While we are not on the verge of imminent closure as a Charity, we need to be moving in the right direction. At the moment we're not...
I'm aware some of you are not in the UK and therefore cannot join the charity. But can we ask those of you who have not yet joined, why not? This isn't about pressuring anyone to join. It's about understanding why people who live with RLS have not joined the charity which is trying to help them. We need to know if there is something we are doing wrong or something we can improve. We are seeing a large pharmaceutical company in a few weeks and want to tell them about how our charity has grown. We can't because it hasn't.
It may be that you feel the annual fee is too high (£10) or that you don't want the newsletters. It might be that your RLS is mild and you therefore do not feel the need to commit to joining the charity. It might be that you simply do not want to join. Whatever the reason, please share it with us. We need to know so we can try to stop the drop in member numbers.
For the record, we don't have high operating costs so this is not about money. It's about representation. We want to represent Charity members but we need members to represent!
Thank you
Daragh. Chair RLS-UK
Written by
Daragh
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Hi, i will join, i think as a user of the site, and the facebook page, iwe should support you for what your doing to help, and thanks Daragh for your help .
Please can you send me a private message via the HealthUnlocked tab (with your name and address) or email me chair@rls-uk.org (with your name and address) and I will pop the form in the post. Thanks again!
I am very pleased to be a member and would urge others to do so. There are the benefits of newsletters and other information. We all complain, myself included, that not enough people in the medical profession know of this illness or dismiss it entirlely when it can be pure torture, as it was described a very long time ago. We have to change this view and the only way to do that is by numbers and raising it's profile.
Under 200 paid up members, that is shameful. Oh dear, that is so embarrassing.
Of course I am a member and proud to be one. My RLS is not at all bad now and seems to have abated most of the time, thank goodness, unlike many others, where it gets worse with age. I have other ailments that seem to have taken over. I paid my subscription and later joined the forum. I feel very sympathetic towards anyone who has RLS symptoms and am grateful for the site and charity so joined some time ago. It just seemed the natural thing to do.
I do hope that all these lovely people who have said they will join, do so. Power is in numbers. £10.00 is not much is it? I think this is most reasonable compared with other charities where I am a paid up member. I for one would be willing to pay more.
I wish you well when you see this pharmaceutical company in a few weeks time and I sincerely hope that by then we will have more paid up members.
Thank you for starting the thread, Daragh. It needed to be addressed.
I agree whole heartedly Kaarina So pleased your RLS has improved. Shows us that it can.
I dont mean this disrespectful, but £10 CAN be alot of money for some people to find. People who may be on disability or pensioners may find it hard to pay, in the present climate, everyone is struggling just to keep a roof over their heads, eat and keep warm. We dont know everyone's personal situation who post on here.
True. £10.00 can be a lot of money for some people to pay out. Personally I feel I get good value for my £10.00 being a member of the charity. From the replies it would seem people do wish to be members but needed a reminder. £10 over 12 months seems very reasonable to me.We all make choices and if one cannot afford to be a member then that is that.
We were asked our reasons for not joining. So far, no one has said the amount is the reason why they have not joined.
I dont mean to sound disrespectful of other folks' situations either -I'm retired and on a fixed income myself, and I do appreciate that £10 in one chunk could be difficult for some -but - 25p a week? How much does their broadband/ internet access cost??
If it is difficult to pay out £10.00 in one go but someone still wishes to support the charity by becoming a member, perhaps putting away 20p a week and joining in a year's time is a possibility. Where there is a will there is quite often a way.
Sorry Dargh I did'nt realise that we had to join, of course I will join, could you please send me the form etc, and I will do it asap. Thanks for bringing this to my attention, I would'nt want to loose this site, but most of all, the more power to the elbow the better.
Thank you for your offer to join. I need to make clear that joining the charity is entirely voluntary and you are under no obligation to do so. Not joining will in no way impact on your ability to fully use the HealthUnlocked site. It's merely that we need more charity members to increase our leverage when dealing with the media etc. If you would still like to join we would be very happy to welcome you as a member. Please message me your email address and I will forward you a membership form or you can download one from the rls-uk.org website, from the 'Membership' page.
I am not a member yet as my symptoms are so bad I cannot work at the moment and I can't afford the £10 fee. I will be joining as soon as I can because I think it is very important for medical personnel and members of families and the public to become aware of just how debilitating this disease can be
I am a member, but forgot to renew, I will do so asap.
I also went to your AGM in London some time ago, I will message you with my views.
I have had RLS for over 30 years, and finally got some medications that is controlling the jerking, sensations, and discomfort, it is Ropinrole (I know it is the same for parkinsons disease). It took until 2 years ago to get something that finally works after suffering for all those years, I get frustrated if I am in a meeting and they start, and sometimes I have kicked the person opposite me, !!
I have also got my partner covered in bruises over his legs, due to them kicking, (however I blame the RLS even when it is to stop him snoring!, I get away with it).
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I had also worked out what it cost weekly after sending my reply, tallula and made it 20p but I was never any good at maths. LOL
RLS experts UK?
