Vision for the Future
A message from Vic Chair Sonja Crisp
How things are moving on. We now have the much improved and revamped website and a more user-friendly forum site too. This is a work in progress and we aim to update the website more often to keep our members informed about what we as a board are doing and also to give out regular updates on what is new out there in the world of RLS research.
Both the forum and the website are now being accessed more often which is very reassuring news for us as an organisation and as sufferers of RLS.
Our Membership is increasing rapidly and indeed has double over the last 12 months and so the workload continues to increase. We have some new board members now and will be hopefully adopting 1 or 2 new Trustees very shortly which is fabulous news.
We continue to engage with and become firmly linked with medics and academics, not to mention the drug companies, however, in these fiscally difficult times we have to redouble our efforts to secure continued funding to move forward with our vision to facilitate research into RLS in a meaningful and constructive way.
We had the Annual General Meeting in September, which was a part of our initial vision and we had a wonderful day and made many new friends, with speakers and very welcomed feedback on what you, as members would like to see at our AGM’s in the future.
UCB have continued to fund us and we hope that may continue despite these difficult times. With a combination of the UCB funding and the hard work of the board, not to mention the support of you, the members, has meant that our vision is closer than ever to reality.
The Charities Commission have indicated we will get registered status once we have altered one of two minor wordings in our Constitution and hopefully we will get the necessary number of members attend that Special General Meeting to enable us to move forward with that and then we can really work on getting noticed.
We are now full members of EARLS which is the European Alliance For Restless Legs Syndrome and are part of a greater pool of information on research and are now able to share with others our experiences and to hear of theirs and of course the follow on to that is that we now
come under the umbrella of EFNA, which is the European Federation of Neurological Associations which in essence is our path to having a voice in Brussels at the European Parliament.
Having attended the recent EARLS AGM it is clear that we are doing all the right things and the other European Member Groups were very impressed at the progress we have made in the last 12 months.
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 still 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 of this under diagnosed but debilitating and stressful condition that our members and often their families suffer from.
So, we now need a new, greater vision. We are accomplishing our goals slowly but surely and so I will be tasked to put together our new vision document for our next newsletter. I look forward to doing that but most of all I look forward to next years update when we can announce what parts of that new vision document we will have achieved or are on the way to achieving.
Sonja Crisp
Vice Chair
