Volunteers Week is from 1 June until 7 June. We wanted to use this time to thank all our fantastic volunteers for all their support and incredible work. They have been actively volunteering, and we are ever so grateful that they are a part of Ataxia UK. Ataxia UK simply wouldn’t have the same impact without the ongoing and generous support of our volunteers.
A heartfelt thank you to the brilliant volunteers at Ataxia UK! Your selfless dedication and unwavering support are changing lives and bringing hope to those affected by ataxia. Your tireless efforts inspire us all to keep fighting for a better future for the ataxia community. Together, we can make a difference! – Wendy, Head of Services at Ataxia UK
Here are quotes from some of our lovely volunteers.
Dawn:…During lockdown, I began the Ataxia Essex Zoom Support Group. This meeting is held on the Second Tuesday of the month. There was a need for this meeting to continue. It is a smaller group with 3-8 members meeting. Again this group is for anyone with Ataxia.
Coming out of lockdown Ataxia UK had asked for volunteers to help with various posts. My first thought was “I’m not up to it.” But I called and spoke to Ataxia UK and after some thought I applied to help on the helpline. I was fully trained and equipped to begin. I enjoy my time on the helpline. Mostly listening and helping those that call in. Again exactly where I began, trying to abolish the feeling of isolation for anyone with Ataxia. If you would like any more information, please feel free to contact me at email@example.com.
Laura: Hi, I’m Laura! I am an Ataxia UK Helpline Volunteer. This involves providing help, support, and information to anyone contacting the Helpline by phone or email. The contact may be from someone diagnosed with Ataxia or a friend / relative. On occasion we receive contact from someone who suspects they may have Ataxia but has not had a diagnosis. It can be can be quite challenging but very enjoyable and rewarding – every shift is completely different! I am also actively involved with the Ataxia UK Leeds Support Group and also raise much needed funds for Ataxia UK wherever I can. In November I raised £4,140 + Gift Aid for the charity by walking a marathon in the month. I did this on my treadmill (meaning I could hold on) as having Friedreich Ataxia means I am wobbly to say the least!!
Jane: Hello, my name is Jane – but you won’t get a photo ‘cos I’m camera shy!
I have an NHS background providing admin support to community and hospital nurses as well as working for the medical adviser of a local authority adoption agency. On retirement I returned to hospital as a volunteer greeter renewing many old friendships.
When my husband passed away I wanted to “give something back” to the Ataxia community for the support we both received from them and, as this was at the beginning of Covid, the ideal time to consider telephone befriending. I now support two lovely ladies once a week. Support is probably the wrong word as I have so much fun, the calls always end with a smile on my face as I anticipate the following week’s conversations.
I was asked why I enjoy volunteering, I guess it’s because I’m a chatterbox!
Rachel: Hi, I’m Rachel and I’m an NHS Ambassador for Ataxia UK. Being an NHS Ambassador can be whatever you are interested in. We all complete regular surveys for Neuro Life and for the Neurological Alliance. I have also chosen to get involved with improving my local wheelchair service and with my local university. Last month I did a session with Occupational Therapy students on MS Teams (like Zoom) where I told them about my medical history. They went on a wobbly tour of my house and saw all my aids and adaptations. We finished with questions and answers. The students really enjoyed the session and will now take knowledge of ataxia into their future careers. I have already been asked to come back next year.
Derek: I was diagnosed with Late-Onset Idiopathic Spino-Cerebellar Ataxia 13 years ago and after attending South Downs branch meetings for a while, I was invited to an exploratory meeting in Farnham. To cut a long story short I was nominated group leader & still perform that role today.
A few years ago I was asked by John Chapman to join his group of volunteers meeting patients after their Queens Square consultations. That was the single most rewarding thing I’ve EVER done. Since the pandemic we have carried on online.
In addition a year ago I joined the befriending scheme and that too has been very fulfilling. In recent weeks I have become involved in developing our Support Group/Branch network and I look forward to working with our colleagues to enhance the service to our fellow Ataxians.
There is no doubt my symptoms have progressed but I enjoy the interaction. I am not ashamed to admit that my activity is not entirely altruistic as I personally derive a great deal of satisfaction. There are many Ataxians whose lives are far more affected than I am by the condition so if I can do anything to help them I will. I am constantly so impressed by their resilience & bravery.
Gemma: It was through social media that I found out about All About Ataxia (AAA) and decided to complete the two days, in October 2020. During the two days I heard about all the opportunities to volunteer and when I approached the office they thought I would suit being a facilitator for AAA. I think AAA offers the opportunity to receive clear and honest information from various health professionals, resources to gain further information, and the opportunity to meet others with a similar condition. We also discuss helpful tips about how to be referred to a neurologist with a specialist interest in ataxia or to one of the specialist ataxia centres in the country, and most importantly we gain friendship. Despite being a facilitator on a number of AAA sessions, I never stop learning about the condition and always take away something new. It gives me an opportunity to meet others, pick up useful information from other participants and meet some lovely people.
Vanessa: My name is Yvette Loach and with my sister Vanessa Bartlett, we run a voluntary group covering Rainham & Gravesend.
My family had never heard of Ataxia until tragically my son James died suddenly and unexpectedly from heart failure associated with Friedreich’s Ataxia, aged just 19. Our world literally shattered and we just felt that we wanted/needed to do something in his memory that would help other people suffering with the same condition as him.
If James had been diagnosed with Friedreich’s Ataxia when his problems first started, Vanessa and I would have wanted him to have had as much support as possible. Finding out you have a progressive degenerative illness and no cure at present, is a daunting and scary prospect for someone so young or indeed anyone and a good support group is absolutely vital.
Vanessa and I would describe ours as a friendly, social group where you can relax, have a beverage, a bite to eat if you wish and a chat. It enables our members to find out information from each other, Ataxia related and for questions we are unsure of, we make sure we get the answers required from Ataxia UK.
James was an inspiration to many people and that gives us the motivation to keep fundraising, raising awareness and to run our volunteers group in the hope of finding a cure. We hope our meetings are informative yet provides light hearted moments for people who truly deserve all the help and support they need.
Volunteer for Ataxia UK
From running our Support Groups to volunteering on the Helpline, we aim to provide a range of opportunities that match people’s skills and interests. Most volunteering roles can be done from home, all you need is a stable internet connection and a device to connect to the internet and you could get involved!
Check out our volunteering opportunities below and get in touch to get started on your volunteer journey. You can register your interest by filling out our volunteering form further down this page or by emailing us at firstname.lastname@example.org.
If you have any further queries please contact the Services Team directly on email@example.com
Ataxia UK Helpline
Please note that you can contact the team. Please get in touch via the Helpline, by calling 0800 995 6037 or by emailing firstname.lastname@example.org. The Helpline is open Monday to Thursday 10.30am until 2.30pm.
Join Ataxia UK
If you have ataxia, you care for someone with ataxia or you’re affected by ataxia in any sort of way, this membership is for you. Becoming a friend means you will gain access to many services for free