Victoria Collins MP meets Harpenden-based charity for children with rare life-limiting condition

Harpenden and Berkhamsted’s new MP has met a local charity who help families affected by a severe childhood neurological disorder.

Victoria Collins visited the headquarters of the AT Society, based in Harpenden.

The charity provides research and support for Ataxia-Telangiectasia (AT), a rare degenerative and life-limiting genetic condition.

AT causes disability, difficulty with speech and movement, respiratory problems, cancers, and premature death.

The society was co-founded in 1989 by Harpenden resident Maureen Poupard, whose children Caroline and Gregory both died from the disease.

It funds specialist clinics and research for a cure. The charity also raises awareness of AT, and supports families through outreach, mental health support, and advocacy

Victoria met with Susie Norbury, Director of Fundraising and Operations, and Kay Atkinson, Head of Services.

Victoria Collins MP for Harpenden and Berkhamsted said:

“It was a great privilege to meet the AT team and learn about the extraordinary work they do for families across the UK - all from an office, and humble beginnings, here in Harpenden.

“Through their hard work and dedication over 35 years, the society has made a huge difference to families affected by this devastating condition.

“We spoke about the challenges these families experience from education, health and care provision, benefits management, and appropriate housing.

“I also heard about the increasing challenges faced by the voluntary sector, and the team’s extensive work with the NHS.

“As the local MP, I will provide the AT Society with all the ongoing support I can.

“We should be very proud that Harpenden is home to such a remarkable organisation”.

On behalf of the AT Society, Susie Norbury said:

“We were delighted to meet with Victoria.The challenges that small charities are facing right now, especially in terms of increasing beneficiary needs at a time when funding is decreasing, are considerable.

“We are so pleased to have the support of Victoria to help with the issues that matter and the realities facing our community”.