In 2011, when our 4 year old daughter was diagnosed with the incurable neurodegenerative genetic condition "Ataxia-Telangiectasia" ("A-T"), we were told by the doctors that unfortunately, no one was looking for a cure because there was little funding for research into a rare condition.

We set up the research charity Action for A-T to raise money to fund high quality medical research into this condition that slowly robs children of all their physical abilities and limits their life expectancy due to vulnerability to cancers and respiratory problems.

The charity has already funded over 50 research studies across 11 countries and has provided over £5m of funding to enable that work to take place. Importantly, the scientific community is now engaged with this condition and coming to us seeking funding to explore exciting new avenues of enquiry that offer hope to all children with this condition.

Research is iterative and the timeline to finding a cure has unquestionably been reduced already, but there is more work to be done and more research that we need your help to fund. So please, dig deep- I will be as I battle through these endurance challenges this summer!