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 the individuals & families. Isolation, difficulties accessing services, & the financial cost of disability, all add to their challenges & the severe inequalities experienced by these extremely marginalised families.

To improve AT family’s mental health/wellbeing we will deliver specialist AT family support services to 240 AT individuals and their 800+ family members across the UK. The services will include social activities, crisis support meetings, training, mobility equipment help, fully accessible/easy to understand advice & helpline, & research to find treatments & an eventual cure. By delivering these vital AT services it will reduce isolation & anxiety and improve coping mechanisms for AT families.