Vision for the Future
A message from Committee member Sonja Crisp
I think we have all experienced the need for the forum. Contacting other sufferers, especially when first experiencing symptoms or after initial diagnosis can be a life line and that will definitely continue. The membership is increasing and so the workload will inevitably increase so we needed to update and modernise the website so that it is easier to use, has full information on the organisation and has useful and informative links for members and their families as well as researchers to access. There is a clear need to become firmly linked with medics and academics, not to mention the drug companies if we are to progress our aims in a meaningful and constructive way.
It would be wonderful to have an Annual Meeting - perhaps a full day, where we can have Prof Ray Chaudhuri and other speakers, medical and otherwise come along and talk to us about this condition and update us in rather more detail than we can touch on in our newsletter on any new research or findings associated with RLS.
Beverley Finn who is our lynchpin, manning the telephones and doing all the day to day administration will testify to the fact that we struggle to pay for the telephone calls and the stationary at the moment never mind any printing that is needed out of the small fund base we have, so, there would be a need for fundraising.
Once we are registered with the Charities Commission and that process is now under way, then we can start to actively fundraise without incurring tax liabilities. This will allow a formalised constructive approach to fundraising which we will need to do if we wish to have an organisation which can move forward and support its members whilst attracting greater consultation and formal input from academics and medical specialist consultants on the subject of Restless Leg Syndrome.We would hope that members would want to be involved in that and would certainly welcome any ideas, however daft they sound to raise funds to help keep the organisation running.
Coffee mornings, make up and clothing parties, cheese & wine evenings, sponsored events, anything that would help raise money and most importantly awareness or this under diagnosed but debilitating and stressful condition that our mrmbers and often their families suffer from.
Once the organisation under its new name of RLS-UK/Ekbom Syndrome Association has gained charitable status then we can move forward and look to joining with other European organisations, such as EARLS which is the European Alliance For Restless Legs Syndrome. This would mean that we would be part of a greater pool of information on research and enable us to share with others our experiences and to hear of theirs.
One of the major advantages of this will be that we could potentially then come under the umbrella of EFNA, which is the European Federation of Neurological Associations which would in essence be our path to having a voice in Brussels at the European Parliament.
EFNA works very hard at promoting the causes of patient groups and enables them to become empowered by aiding them in their effort to become officially recognised charitable organisation. EFNA is committed to aiding us in achieving that stage of our development, all that is required from us as a patient group is our commitment to move forward and I suspect, a lot of hard work ahead of us to achieve that goal.
It would be wonderful to have an Annual Meeting - perhaps a full day, where we can have Prof Ray Chaudhuri and other speakers, medical and otherwise come along and talk to us about this condition and update us in rather more detail than we can touch on in our newsletter on any new research or findings associated with RLS.
Beverley Finn who is our lynchpin, manning the telephones and doing all the day to day administration will testify to the fact that we struggle to pay for the telephone calls and the stationary at the moment never mind any printing that is needed out of the small fund base we have, so, there would be a need for fundraising.
Once we are registered with the Charities Commission and that process is now under way, then we can start to actively fundraise without incurring tax liabilities. This will allow a formalised constructive approach to fundraising which we will need to do if we wish to have an organisation which can move forward and support its members whilst attracting greater consultation and formal input from academics and medical specialist consultants on the subject of Restless Leg Syndrome.We would hope that members would want to be involved in that and would certainly welcome any ideas, however daft they sound to raise funds to help keep the organisation running.
Coffee mornings, make up and clothing parties, cheese & wine evenings, sponsored events, anything that would help raise money and most importantly awareness or this under diagnosed but debilitating and stressful condition that our mrmbers and often their families suffer from.
Once the organisation under its new name of RLS-UK/Ekbom Syndrome Association has gained charitable status then we can move forward and look to joining with other European organisations, such as EARLS which is the European Alliance For Restless Legs Syndrome. This would mean that we would be part of a greater pool of information on research and enable us to share with others our experiences and to hear of theirs.
One of the major advantages of this will be that we could potentially then come under the umbrella of EFNA, which is the European Federation of Neurological Associations which would in essence be our path to having a voice in Brussels at the European Parliament.
EFNA works very hard at promoting the causes of patient groups and enables them to become empowered by aiding them in their effort to become officially recognised charitable organisation. EFNA is committed to aiding us in achieving that stage of our development, all that is required from us as a patient group is our commitment to move forward and I suspect, a lot of hard work ahead of us to achieve that goal.
