Harpenden mother's rare genetic disorder charity, A-T Society, celebrates its 25th birthday

St Albans & Harpenden Review: Mother's rare genetic disorder charity celebrates 25th birthday Mother's rare genetic disorder charity celebrates 25th birthday

A charity set up by a Harpenden mother, who lost her son and daughter to a genetic condition, is celebrating its 25th birthday this year.

Caroline and Gregory Poupard both suffered from ataxia-telangiectasia (A-T), a complex genetic disease which causes severe disability in children and premature death.

Caroline died in 2001, aged just 23, the following year her brother, Gregory, lost his life, aged 26.

Virtually an unknown genetic condition with devastating consequences, families had no way of meeting or contacting other people living with A-T.

Therefore in 1989, Maureen Poupard and clinical geneticist Dr Geoff Woods sent out letters to all the families they knew of with a child with A-T inviting them to a meeting at Birmingham Children’s Hospice.

Twenty-two families expressed an interest in meeting and thirteen turned up in Birmingham. It was there that the families decided to create a support group and the A-T Society was born.

Today members of the charity, based in the IACR-Rothamsted, Harpenden, hope they can celebrate its silver anniversary by raising money and awareness.

William Davis chief executive of the A-T Society said: "In 25 years we have achieved so much, but there is so much still to do. We want to build on the progress we have made and further increase length and quality of life. We want to make sure our young adults have the support they need to make the most of the time that they have.

"We are planning a series of research studies which will draw in new researchers and new ideas and open the way to new treatments."

"Your support can make a real difference. Because A-T is so rare, we can’t rely solely on people who have a personal connection to our disease, as do organisations helping people with more common conditions. Our families and supporters work tirelessly running, walking, swimming, cycling, baking, organising and persuading.

"But we also need help from people like you who share our conviction that even children with a rare disease deserve to have real hope of a future with first-rate researchers trying to make their lives better."

Mr Davis is also encouraging residents to take part in the Brighton Marathon in April and RideLondon100 in August, as well as in other running and cycling events to help fundraise for the A-T Society.

He said: "Brighton is especially convenient for people living in and around St Albans as it’s a straight run on the Thameslink."

Mr Davis himself is taking part in the charity’s first ever "Top to Toe of the Emerald Isle" event, a 437 mile bike ride from Malin Point to Mizen Head in Ireland.

He added: "We would love the Review readers to join the teams and take part our events, or perhaps to organise something of their own."

From that first group of families the A-T Society has continued to grow and is now in touch with almost every family with a diagnosis of A-T in the UK and Ireland. Currently around one in 200 people carry the defective gene, which can cause A-T and the number of new diagnoses is increasing every year.

In 1994, the A-T Society established the world’s first specialist A-T clinic at Nottingham City Hospital, a model for other clinics around the world.

As care has improved, average life expectancy in the UK has increased from 18 years to around 26-years-old. The £1.2 million the A-T Society has invested in research has led to major advances in the understanding of A-T and current research also has strong potential to help patients with cancer.

The A-T Society also organises annual weekends where families can come together and get the latest information on care and research. They also arrange activity weekends and respite breaks to give people with A-T a chance to learn new skills and grow in confidence.

For more information visit www.atsociety.org.uk or to get involved contact 01582 760 733 or email: info@atsociety.org.uk.

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