Dystonia Awareness Month September 2020

Dystonia Awareness Month September 2020

Dystonia awareness month is a big event in our annual calendar. It gives us some great opportunities to raise awareness and get our message out to as many people as possible.

This year we are planning the following actions:

  • On Facebook we will be sharing the following every day: 
    • Medical facts about dystonia.
    • Information on types of dystonia.
    • Positive messages on coping with dystonia.
  • On our website we will be posting the following:
    • Dystonia Talks videos shared from Dystonia Europe.
    • Dystonia Europe videos of D Days 2019.
    • Information on Dystonia clinics in the UK.
    • Information on relevant Physiotherapy clinics in the UK. 
  • Local Radio:
    • We hope to have interviews aired on Middlesbrough local radio stations.
    • And the same for Newcastle local radio stations.
  • Newspapers:
    • We are aiming to have at least one article/interview published in as many newspapers as we can.

Please look out for our campaign and support us by liking and sharing our social media campaign and of course listening to our radio interviews and reading our newspaper articles.


Latest update about Great North Run 2020

We are very please to let you all know that the Great North Run organisation has offered an alternative run to all the runners who were taking part this year.

They can do a ‘solo’ run each day for 40 days, after which they will receive acknowledgement that they have completed the challenge.

You can read more details about it on the GNR website:


We have also asked our runners if they would consider running the half marathon in their own time and continue to raise funds for A.D.D.E.R. Several have already agreed! This is for those runners who do not wish to take part in the GNR Solo event.

If you would like to sponsor any of our runners please visit our Just Giving page and follow the clear instructions on how to donate.


A.D.D.E.R. Committee

A.D.D.E.R. Committee

We currently have 7 members of the committee and 3 vacancies.

A.D.D.E.R. is run entirely by volunteers who are also committee members.

The current committee have all served for several years and are very experienced, each one of us has a different role within A.D.D.E.R. but we all work together to continue to raise awareness of dystonia and provide support to those who need it.

If you are a member and interested in joining our committee please contact us at:

email: office@actionfordystonia.co.uk

tel: 07765 743 656

by post: A.D.D.E.R., Kibblesworth Millennium Centre, Grange Terrace, Kibblesworth, Gateshead, Tyne and Wear, NE11 0XN

MyDystonia APP

Some of you will already know about the MyDystonia App which has been developed by Dystonia Europe.

It is an electronic diary to record your symptoms, daily, weekly or how ever often you want to.

From the information you put into the app you can create a report of your symptoms to show your consultant.

This can be in text or a graph. Personally I prefer to show my consultant a graph of my symptoms as he can very easily see when I have had the best benefit from my botulinum toxin injections.

It is also very easy to see when my symptoms have been temporarily worse or better and with other information you can record you can analyse this to see why your symptoms were worse or better. For example you may have had a stressful day, you may have done something unusual for you or you may have been exercising.

The app is currently being update to version 2.0 which promises to be even better than the original version!

The app is free to download onto your computer, tablet or smart phone and your data is kept private and confidential. At some time in the future the data will be used for research purposes but it will be completely anonymous, you personal details will not be shared with anyone or any organisations etc.

I highly recommend you give it a try and please let us know what you think by using the help function within the app.


Gill Ainsley, ADDER Treasurer and Administrator.

A.D.D.E.R. Constitution

A.D.D.E.R. Constitution

  1. NAME – The name of the Charity is:

Action for Dystonia, Diagnosis, Education and Research (A.D.D.E.R.) referred to in this document as “The Charity”.

Charity Number 1077578

  1. OBJECTS – the objects of the charity are:
    1. To advance the education of the public in relation to the sickness and distress caused by the neurological conditions known as Dystonia.
    2. To promote the treatment of people with Dystonia and other related movement disorders and to offer support and welfare to patients, their carers and families.
    3. To promote awareness and encourage research amongst the medical profession of the neurological conditions known as Dystonia.
  2. POWERS – In furtherance of the objects but not otherwise the charity may:
    1. Undertake research and publish the results, arrange exhibitions, lectures and other profile raising events relating to Dystonia;
    2. Co-operate with other charities, voluntary bodies and statutory authorities operating in furtherance of the objects or of similar charitable purposes and to exchange information and advice with them;
    3. Employ and remunerate such staff (who shall not be members of the management committee) as are necessary for the proper pursuit of the objects;
    4. Acquire and dispose of property (subject to any consents required by law);
    5. Invest funds by any lawful means except permanent trading;
    6. Raise funds by any lawful means except permanent trading;
    7. Accept gifts for the general purposes of the charity or for a specific purpose within or connected with the objects;
    8. Do anything else within the law which is necessary in carrying out the objects.
    1. Membership of the charity is open to any individual or organisation interested in furthering the objects and who completes an application form as prescribed by the management committee;
    2. Every member must pay an annual subscription of such amount as the management committee decides from time to time.
    3. Every individual member and the appointed representative of every organisation in membership has one vote at general meetings of the charity;
    4. A member may resign his, her or its organisational membership at any time and a member who is three months in arrears with his, her or its subscriptions is deemed to have resigned but may rejoin on payment of the arrears;
    5. If the management committee consider that a member’s conduct is harmful to the charity, it may by resolution require the member concerned to either resign or to put his, her or its case to a special meeting of the Management;
    6. Where the management committee is satisfied after hearing the case put by or on behalf of the member concerned that the member should leave the charity it may terminate that membership by written notice and that notice is final;
    7. The management committee may make provision for non-voting categories of membership including junior membership, associate membership and honorary membership, and set the subscriptions payable (if any);
    8. The management committee must keep a list of current members in each category.
    1. There must be an Annual General Meeting of the members of the charity once in every calendar year.
    2. At the Annual General Meeting the members will:
      1. 5.2.1.Receive the management committee’s report for the previous year.
      2. 5.2.2.Receive the treasurer’s report and accounts for the previous year.
      3. 5.2.3.Hold an election to fill vacancies on the management committee for the following year(s).
      4. 5.2.4.Discuss and advise the new management committee on matters of policy for the charity.
      5. 5.2.5.Determine any other matter of which notice has been given.
    3. A special meeting of the members of the charity may be held at any time if called by the management committee or if at least 10 voting members of the charity make a written request to the management committee.
    4. A special general meeting must be called within two weeks of such a request.
    5. A general meeting requires 28 days notice to be given to the members specifying the matters to be dealt with.
    6. A quorum at a general meeting is at least 3 committee members plus at least 3 ordinary members. If there is no quorum at the meeting it may be adjourned for at least 14 days and the number present at the adjourned meeting if at least three will constitute a quorum for that meeting.
    7. The chairperson of the management committee or in their absence some other person elected by the meeting takes the chair at general meetings.
    8. Except where this constitution provides for a larger majority on a specific question, every question is decided by a majority of the votes cast. In the case of equality of votes the chairperson has a second or casting vote.
    1. The management committee (the committee) is the body responsible for the management of the charity.
    2. The committee consists of a minimum of four and a maximum of twelve voting members (who are either individual members of the charity or the appointed representatives of organisations in membership). Not less that 50% of the committee must have dystonia or a related neurological disorder.
    3. Elections to the committee are held annually at the Annual General Meeting and committee members normally hold office for three years (until the end of the annual general meeting three years after their election). See 6.4 below.
    4. At the first AGM one third of the members shall be elected to serve for one year, one third of the members shall be elected to serve for two years and one third of the members shall be elected to serve for a full three year term. Thereafter one third of the committee will be elected each year.
    5. A member of the committee who resigns by written notice to the committee, who is absent from six consecutive meetings of the committee or who is disqualified by law from acting as a charity trustee, ceases automatically to be a member of the committee.
    6. Casual vacancies in the committee may be filled by the committee by co-option, and a co-opted member will have the same voting powers and hold office for the same period as the committee member he or she replaces.


  1. The committee must meet at least twice in every calendar year. A special meeting of the committee may be called at any time on seven days notice. A quorum at committee meetings is four.
  2. At the first meeting of the committee in every year, the members must appoint from among themselves a Chairperson, a Treasurer and such other honorary officers as they think fit.
  3. Every question is decided by a simple majority of the committee members present and voting at a meeting. In the case of equality of votes the chairperson of the meeting has a second or casting vote.
  4. The committee may appoint sub-committees including at least two management committee members to advise them or to carry out specific tasks in the management of the charity but sub-committees must always report back to the committee as soon as possible.
  5. The committee must keep minutes of its meetings and proceedings and keep safe all records relating to the charity.
  6. The committee may make rules to govern its own proceedings and the proceedings of sub-committees so long as they are not inconsistent with the provisions of this constitution.


  1. Every candidate for election to the committee must be nominated and seconded in writing by members of the charity and must give his or her written consent to stand for election.
  2. Nominations and consents must be sent to the committee within seven days of the notice calling for the AGM.
  3. Normally, no person who has been an elected member of the committee for two consecutive terms of three years should be eligible for re-election for the immediately following year but may (if duly qualified) stand again for election at the AGM in the subsequent year. However, if there are insufficient volunteers to keep the required number of committee members, then members who have served 6 years can be re-elected.


  1. All funds of the charity, including all donation, bequests and contributions shall be paid into an account operated by the committee in the name of the charity and must be used in furthering the objects.
  2. No member of the committee may be employed by the charity or receive any payment or other benefit from its funds except for reasonable out of pocket expenses properly incurred for the purposes of the charity.
  3. The committee is responsible for the keeping of books of accounts and for the preparation of an annual report and annual statement of accounts for the charity, copies of which must be sent to the Charity Commissioners as required by law.
  4. The committee is responsible for arranging for the accounts of the charity to be audited by a registered auditor or, so long as the income or expenditure for the year in questions does not exceed £250,000, examined by an independent examiner.
  5. The committee shall maintain one or more accounts in the name of the charity at a bank or building society. All withdrawals from the charity’s account must be authorised and signed by at least two members of the committee.


  1. 10.1.Subject to the provisions of sub-clause 2 of this clause, the management committee shall cause the title to all land held by or in trust for the charity which is not vested in the official custodian for charities; and all investments held by or on behalf of the charity; to be vested in a corporation entitled to act as custodian trustee or in not less than three individuals appointed by them as holding trustees. Holding trustees may be removed by the management committee at their pleasure and shall act in accordance with the lawful directions of the management committee. Provided they act only in accordance with the lawful directions of the management committee, the holding trustees shall not be liable for the acts and defaults of its members.
  2. 10.2.If a corporation entitled to act as custodian trustee has not been appointed to hold the property of the charity, the management committee may permit any investments held by or in trust for the charity to be held in the name of a clearing bank, trust corporation or any stock-broking company which is a member of the International Stock Exchange (or any subsidiary of any such stock-broking company) as nominee for the management committee, and may pay such a nominee reasonable and proper remuneration for acting as such.


  1. 11.1.The provisions of this constitution may be amended at a general meeting by resolution passed by two thirds of the members present and voting but:
  2. 11.2.Notice of the terms of the proposed amendment must be given with the notice calling the meeting.
  3. 11.3.No amendment will be valid if it would bring about a fundamental change in the objects or if its effect would be that the charity ceased to be a charity according to English law.
  4. 11.4.No amendment may be made to clause 1 (the name), 2 (the objects), 9.2 (trustees not to be remunerated), 13 (dissolution) or this clause without the prior consent in writing of the commissioners.


  1. 12.1.The charity may be dissolved at a general meeting by resolution passed by two-thirds of the members present and voting.
  2. 12.2.In the event of dissolution, the members of the committee holding office will remain responsible for the orderly winding up of the affairs of the charity.
  3. 12.3.After paying or making provision for all debts and liabilities of the charity, the committee shall transfer any remaining assets to one or more registered charities having objects similar to the objects of the charity.
  4. 12.4.The committee shall send a final statement of account to the Charity Commissioners.


  1. 13.1.Any dispute as to the interpretation of this constitution or as to the propriety of any action taken or proposed by one or more members of the committee may be resolved by unanimous decision of the committee or referred to an independent advisor or mediator.


  1. 14.1.Until the first annual general meeting takes place, this constitution shall take effect as if references in it to the management committee were references to the persons whose signature appear at the bottom of the original constitution.

This Constitution, version IV, was adopted on (date) __________________________

Name ______________________ Signature ______________________________

Name ______________________ Signature _____________________________

Name ______________________ Signature _____________________________



  • 1. To advance the education of the public in relation to the sickness and distress caused by the neurological conditions known as Dystonia.
  • 2. To promote the treatment of people with Dystonia and other related movement disorders and to offer support and welfare to patients, their carers and families.
  • 3. To promote awareness and encourage research amongst the medical profession of the neurological conditions known as Dystonia.

Covid – 19

January 2021:

Sadly the ADDER office is still closed but we are hoping to get it open as soon as we are allowed, maybe late spring/early summer.

We do have a new mobile telephone number which is regularly manned although not full time. We are still working out the best way to use the new mobile phone so please bear with us while we sort that out, the new number is 07765 743 656.

NB: We no longer have the old landline number.

I now have access to the ADDER emails at home as well as the ADDER PC so I can always help you by email: office@actionfordystonia.co.uk

Please continue to stay home, stay safe, stay healthy.

Gill Ainsley

Great North Run 2019/20

The Great North Run is our main fund raising event each year and 2019 was no exception.

We bought 20 places but unfortunately for various reasons we only had 8 runners. However, those 8 runners managed to raise in excess of £3,600!!

The 20 places cost us £1,600 so we still made a profit of over £2,000, thank you to all our brave runners and those who sponsored them.

Most people seem to be unaware of the cost of places in the run for a charity. Each place costs £82 which is more than an individual would pay for a place. We have to ask for our places around October – November the year before the run and then we are told how many places we can have. Once we have our places we then have to pay for them usually before the end of the year for the next year’s run.

It is quite a big commitment for a small charity like ours and of course we try our best to fill all the places but don’t always manage.

This year, 2020, we have only been allocated 10 places and they are already taken, this year we have more volunteer runners than places! We do understand that some runners may have to withdraw so it’s always good to have more than we need.

We will be sending out sponsor forms to all our members and each runner will create a Just Giving page for their families and friends to sponsor them on line.

As only eight runners managed to raise £3,600 last year we are hoping for a bit more this year!