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.


Self Management Research

Last year two of our trustees participated and helped with a Research project done by Dr Stephanie Kilinc CPsychol of Teeside University.

The research was titled “Finding Meaning and Purpose: a framework for the self management of neurological conditions.

Gill Shevlin and Dr Thein Wynn, both A.D.D.E.R. trustees attended various workshops and information gathering sessions along with other patients with different neurological conditions, to help Dr Killinc with her research.

The project was completed by May 2020 and the outcome was a Self Management Tool.

The tool is divided into 5 books to help you through your journey of self management, use the link below to get more information and to download the tool.



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.


Coast to Coast Cycle Ride

I have been a member of the A.D.D.E.R. committee for several years now. We are always looking for more ways to raise much-needed funds for the charity, for both running costs and especially the research fund, which still has some way to go!

So, I was very grateful when my sister-in-law Marie and her husband Colin informed me, they were going to complete the Coast to Coast Cycle Ride, along with several friends, with a view to raising funds for A.D.D.E.R. via sponsorship.

As keen cyclists, they had been eager to take on the challenge for a while, and they decided the time was right earlier last year.

They left from Whitehaven on Saturday, 25th May, 2019, to start their journey. After the first day, they stopped in Penrith, along with their aches and pains to rest for the first night. On Sunday they continued the hard trek with a couple of unexpected extra miles of wrong turns! They continued through the day until they reached Allenheads, where they stayed the night for another well-deserved rest. So, on Monday, 27th May, with aching limbs and morale starting to feel a little frayed, they set off for the last leg of the challenge.

They arrived very tired, but also very happy, with a great feeling of satisfaction at Roker in Sunderland, where they proceeded to dip their wheels of their bikes in the sea as is the honorary expected tradition!

Everyone appears to have had a really good time – my sister-in-law Marie, her husband Colin and a friend Darren, were the main fundraisers, with friends accompanying them on the journey. Overall, they managed to raise over £600, which is much appreciated.

Thank you to all who took part or contributed to this event.

Gillian Shevlin

Committee Member

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!