Back On Her Bike: Lesley in Training

Back On Her Bike: Lesley in Training

In under a month the AKU Society Team, and a group of supporters, will be cycling 70 miles from London to Cambridge to raise some much needed funds. In this week’s blog, Hannah, our Patient Support Manager, tells us how she first committed to the challenge, and how...
Douglas Takes on the Spartan Challenge

Douglas Takes on the Spartan Challenge

On the 5th of September the Cambridgeshire Spartan Race is taking place. Douglas Johnson is one of our supporters training hard to take part, and raise money for us in the process. In this week’s blog he tells us how he is preparing for the most extreme...
Becoming an Instructor in Chair-Based Exercise

Becoming an Instructor in Chair-Based Exercise

In June we held our 5th Patient Workshop at London Zoo. As I’m sure those of you who attended can recall, the day included a chair-based exercise session. Following the success of the workshop, Hannah, our Patient Support Manager, recently attended a four day course...
Celebrating Genetic Alliance’s 25th Birthday

Celebrating Genetic Alliance’s 25th Birthday

2 weeks ago, we attended the genetic alliance conference, where we celebrated all the work Genetic Alliance UK have achieved over the past 25 years. The director, Alastair Kent started the day with a history of Genetic Alliance. He talked about how much we have...

Meetings with the Specialised Healthcare Alliance

The SHCA is a coalition of patient related groups and corporate members with a strong record of campaigning on behalf of people with rare and complex conditions in need of specialised care. They usually meet quarterly, but this month they held two additional events...