Welcome to our second instalment of Supporting Our Local Heroes, our new series celebrating Hertfordshire’s incredible local charities.
In early 2022, we were absolutely delighted to crown The AT Society first place winners of our For Life’s Great Causes charity campaign, and to see the funds go towards supporting those living with the disabling and life-limiting condition ataxia telangiectasia.
We catch up with the team and find out what the charity has in store for the year ahead...
Can you tell us a little about the background of The AT Society and how the charity was founded?
The AT Society was formed in 1989 by a family from Harpenden who had two children with AT. Maureen wrote to all the families that were known to be living with AT and invited them to a meeting. At that time, there was very little information available about AT and indeed very little was known about the condition. The families that came to the meeting found the experience of meeting with others very helpful and decided to set up a proper support group. A year later, in 1990 the group registered as a charity and the AT Society was born.
For our readers who may be unfamiliar with AT. Can you tell us a little more about the disorder and how it affects those living with AT?
AT is a complex and very variable, genetic condition. No two people will have exactly the same symptoms or experience, even within the same family. Ataxia or loss of coordination is normally the first and most obvious sign that a child has ataxia telangiectasia (AT). Children when they start to sit and stand up may appear clumsy or wobbly, often swaying from side to side when sitting or standing. Diagnosis of AT is usually when a child learns to walk and appears a bit ‘wobbly’. The coordination problems start to affect speech, eating and swallowing. By the age of 10 most children with AT will be making regular use of a wheelchair. People with AT also have immune deficiency, and a high risk of developing cancer and lung disease.Their life expectancy is only 26 years.
The physically disabling impact of AT, and the consequential impact on mental health, is of course, devastating for families. When children with AT reach their teenage years, their lives are very different to their peers and the need for mental health support to cope with the real challenges of living well with the condition is acute. Many of our young people feedback feelings of being trapped by progressive neurodegeneration, with little purposeful activity available post school. Some feel suicidal.
What does The AT Society fund through its donations?
Our help is varied and far reaching and includes: fighting tirelessly for the right education, housing and social care provision for our families; running a helpline to provide expert advice, information, and a listening ear; running specialist AT medical clinics; commissioning research; funding disability equipment, respite and therapeutic interventions. Fundraised donations enable us to deliver social events for peer-to-peer support and friendship as well as providing fun and engaging activities both online and face-to-face, to keep children and young people connected and reduce isolation. When our families get together, no explanations are needed, everyone understands; there is a real strength in that.
What do you love most about your charity?
I love that the AT Society is a small but unique charity that feels more like a family. There are only 216 people in the UK who have the very rare condition of AT and many of the families are involved with fundraising and even sit on the board as Trustees.
Congratulations on winning the For Life’s Great Causes Charity Campaign last year! Can you tell us a bit about what the winning donation means to you as a charity?
As a small charity, winning the For Life’s Great Causes Charity Campaign last year was a huge boost. The money we received really helped to address the significant drop in income we experience during the COVID pandemic, at a time when the needs of people affected by AT had dramatically increased it helped us to make a very real difference to the lives of people affected by AT.
What are you most proud of when you think about what The AT Society has achieved?
Everyone who works at the AT Society is passionate about the charity, helping those affected by this terrible, rare and little-known condition, providing support for families affected by AT and working to provide funding into vital research to find a cure. I am proud that we support 216 children and young people diagnosed with AT and over 700 family members.
What does the AT Society have planned for the rest of 2023 and beyond?
We are really excited to be planning the first AT Society fundraising Golf Day at Harpenden Golf Club on 19 April and another fundraising Skydive on May 13 (which is always a popular event). We also plan to repeat the Christmas Concert that we held in 2022 (only this year, bigger and better) at the beginning of December and repeating our popular annual Christmas Sparkle Draw and Christmas Jumper Day.
What would you say to anyone who is interested in fundraising but isn't sure where to start?
PLEASE get in touch with sally@atsociety.org.uk. We love it when fundraisers support us with individual challenges and events and always have opportunities for volunteers!
In what ways can our readers support the charity and those affected by AT?
We are always grateful for people fundraising on our behalf, raising awareness in the local community, supporting our events and fundraising on our behalf. Those wishing to donate can do so through our website. Thank you.
The AT Society was featured on BBC TV’s Lifeline Appeal on Sunday 29thJanuary, with TV presenter and journalist Louise Minchin speaking to three families, sharing their stories of living with AT. You can watch the feature online here.
Please do visit atsociety.org.uk to find out more about the incredible work of the AT Society or email info@atsociety.org.uk to get in touch.