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!
Daragh. Chair RLS-UK