I have very mixed feelings as I write this notice, I am sad but proud at the same time.
I help to run the charity Action for Dystonia, Diagnosis, Education and Research (ADDER) in the North East of England, UK. We held an extraordinary general meeting recently to discuss the closure of the charity.
The committee (who all help to run this charity) all feel that we have achieved our objective of raising awareness. We have worked hard for over 20 years raising awareness amongst medical professionals and members of the public. While this work hasn’t finished, we feel we have achieved all that we can with the resources we have. Nowadays more and more General Practitioners are aware of Dystonia as are the general public. I recently learned that on a University Degree course (in the UK) for physiotherapists they were taught a little about Dystonia. I hope one day they will be taught a great deal about Dystonia.
We have also worked hard to promote the diagnosis and treatment of Dystonia patients and certainly in our local area the clinics are now well established and run smoothly most of the time. Even during the Covid 19 pandemic patients in the North East of England (and other parts of the UK) received their treatment at their usual intervals.
Our membership has been decreasing for the last few years, we currently have only 170 members and it is rare for new or young patients to join our charity, I firmly believe that this is because there is now so much information about Dystonia freely available on the internet. This has also had an effect on the number of phone calls we receive asking for help, advice and understanding, I can’t remember the last time anyone rang us to ask for help. I also believe that is as a result of us and others raising awareness.
We are still struggling to get our research project off the ground, we do have a researcher interested in completing the study but as the data is now quite old and Dr Butler who collated all the information has passed away it is proving difficult for our researcher to access the files.
If we don’t carry on with that research then the money raised will be donated to a similar charity hopefully for a research project. I can’t confirm that yet though, but whatever happens the money will be put to very good use for Dystonia patients.
We have struggled to attract new volunteers to help run ADDER, most of the current committee have been members for many years, so many years we had to change our constitution a few years ago to allow several committee members to stay on the board longer than the maximum term of 6 years. Some of us are now ready to retire and we have no volunteers to take over.
There is still a large charity in the UK called Dystonia UK so I know anyone who does need help will still get some.
On a personal note I will carry on with my work with Dystonia Europe until my next term of office is complete.
As I said at the beginning I am sad that we are closing ADDER but at the same time I am proud of all we have achieved, we have worked very hard to achieve our objectives and with our current resources we cannot take this any further. It wouldn’t be right for us to carry on raising money and accepting donations when we really can’t do any more than we have already done.
I have made many friends during my time working with ADDER and we will continue to meet whenever we can. ADDER may be closing but our friendship is for life and the work we have done will carry on helping Dystonia patients all over the UK.
Gill Ainsley, ADDER Volunteer, DE Vice President and Secretary.