Ataxia telangiectasia is a serious, disabling, life-limiting condition, with no cure. Diagnosis is usually around 4 yrs old & is devastating. Families face complex struggles to access specialist care. Donations will fund expert mental health support, advocacy & outreach, as well as vital research.
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AT affects coordination & movement. By 10 yrs, most children will be regularly using a wheelchair, and sadly, due to a high risk of cancers & lung disease, average life expectancy is just 26. Being diagnosed with such a cruel condition can be a lonely & frightening experience for those affected. Isolation, difficulties accessing healthcare services, & the added cost of disability, all add to their challenges & the severe inequalities experienced by these extremely marginalised families.
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.