Ataxia telangiectasia (AT) is a disabling & life-shortening children’s condition, with no cure. It is devastating & causes a complex cycle of grief for individuals and families, as they cope with progressive loss & fear for the future. Donations help fund health/wellbeing support & vital research.
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AT causes progressive loss of movement, speech, swallowing and independence. By age 10, most children need a wheelchair, while immune deficiency and high risks of cancer and lung disease mean life expectancy is around 25. Receiving an AT diagnosis can be a lonely & frightening experience & difficulties accessing specialist healthcare services cause an added burden. Families face fear, isolation, unequal access to care and the extra costs of disability.
We help 240 AT individuals, and their 800+ family members cope with the daily challenges of living with AT, by funding urgent medical research, & providing bespoke, expert support services. We improve access to specialist healthcare, provide information & guidance, and reduce isolation through community connections. By addressing medical, emotional, and practical needs, we work to ease the burden of AT and improve quality of life for all those affected.
