Entries by @framework

South Coast 100km Challenge

26th – 27th August 2017 Part of the 100km Challenge series, this trek takes you through some truly stunning scenery from Eastbourne, through the Seven Sisters Country Park, along the South Downs Way to the finish at Arundel. Choose your distance from the full 100km, the first or second half of the course, or the […]

Gene therapy for the treatment of Ataxia Telangiectasia

Research Project Information Principal researchers: Professor Ignacio Molina Institute: University of Granada, Spain Grant award: £80,200 – Funded in partnership with Sparks & A-T Society Project completion date: May 2015 Project Overview Ataxia Telangiectasia (A-T) is caused by a fault in a gene called ATM (Ataxia Telangiectasia Mutated). Unfortunately, no effective treatment is currently available and present medication only alleviates symptoms […]

Brighton Marathon 2018

15th April 2018 The Brighton Marathon is one of the UK’s favourite 26.2-milers. With a stunning backdrop of the sea in one of the country’s most vibrant cities, the race gets bigger and better every year. Renowned for its buzzing atmosphere and roaring crowd support, the course winds through the city streets, finishing up on […]

Virgin Money London Marathon 2018

22nd April 2018 Join the Action for A-T London Marathon team and take on the 26.2 miles that make up this iconic marathon route. Please contact challenge@actionforAT.org to reserve our guaranteed spots or Click Here to enter the public ballot which opens on Monday 1st May 2017.  Key Information • Date: Sunday 23rd April 2017 • Location: […]

Increasing our understanding of Ataxia Telangiectasia

Research Project Information Principal Researchers: Professor Claudio Pignata Institute: University of Naples Federico II, Italy Grant Awarded: £30,000 – In partnership with Sparks and the A-T Society Project Completion Date: January 2015 Project Overview Ataxia Telangiectasia (A-T) is caused by a fault in a gene called ATM (Ataxia Telangiectasia Mutated), which encodes the ATM protein. This protein’s involvement in the regulation of […]

Jenni’s Story

Jenni’s Story- Update April 2016 Very sadly, our darling daughter Jenni passed away on 7th January 2016. Like so many other children with A-T, she was diagnosed with cancer (Non-Hodgkinson’s Lymphoma of the Liver), in August 2015. She was fiercely determined to live, so I spent many weeks over the next 5 months in Alder […]

Lilly’s Story

Lilly was born by planned C section in May of 2009 and was a healthy normal baby. There were no complications during birth. From birth to two years old everything seemed perfectly normal, we had no reason to suspect hard times were upon the horizon. Lilly took her first steps at 10 and a half […]

Tilla and Ines’ Story

Tilla (aged 7) is a funny, caring and beautiful Danish girl, with many friends who lives in a refurbished, old factory building in Copenhagen, Denmark with her little sister, mom and dad. She collects scraps, dries flowers and loves to dress up and play with her many girl friends. Tilla was almost 6 when we […]