Harpenden charity celebrates its 30th anniversary
PUBLISHED: 10:39 27 June 2019
A Harpenden charity celebrated its 30th anniversary with a party at Parliament.
At a reception in the House of Commons, hosted by Hitchin and Harpenden MP Bim Afolmi, the A-T Society recognised three decades of work around the country.
Based in Harpenden, it is the only charity in the UK supporting families of people with ataxia-telangiectasia - a genetic condition with an average life expectancy of just 26 years old.
Symptoms include slurred speech, difficulty swallowing, very slow eye movements, and an increased risk of cancer.
By 10 children are usually in a wheelchair and by 16 they are becoming ever more dependant on their families.
There were 150 people at the 30th celebration, including the charity's founding members and a baby born with A-T this year.
Two parents, Joe Powell and Adelle Rouse, gave a speech highlighting personal challenges faced by families living with A-T and about the charity's support.
Adelle said: "There are so many aspects of our lives that have proved challenging, getting the right support put in place in school, getting funding and assessment for everything from wheelchairs to cutlery, the perilous DFG [Disabled Facilities Grant] applications and minefield of applying for benefits.
"At times the weight of this life is a very heavy burden to carry and can feel so very lonely, and this is where our A-T Society heroes swoop in. They travel up and down the country speaking to schools, meeting local authorities.
"They root for us, laugh with us, cry with us, celebrate and so very sadly, grieve with us."
A-T can occur in babies who have two parents with a particular faulty gene and there are currently about 180 cases in the UK.
MP Bim Afolami spoke about his support for the charity's work and his association with it.
Charity CEO William Davis thanked everyone who has helped the charity over the past 30 years and urged politicians to take action to address issues facing disabled people.
He also set out the charity's future priorities, which include a major investment in research and more work to support adults with A-T.
Find out more about the charity at www.atsociety.org.uk