Workshop for people with Friedreich’s ataxia
Ataxia UK is pleased to have been selected as one of three charities to work in partnership with Findacure on the development of a new model of funding research trials. Click here for more information. We are hoping that if this model works it can be used to fund a trial testing nicotinamide in Friedreich’s ataxia. As part of this project the charity Findacure would like to organise a workshop with around 8 people with FA and parents of people with FA, to discuss the impact of ataxia, current treatment options as well as specifically discussing how trials should be planned.
We are therefore looking for a small group of people with Friedreich’s ataxia to come to this workshop to be held on the Wednesday 1st June at the Ataxia UK office in London. At this stage we think there will be up to £50 per person available from Findacure to reimburse travel expenses, so please let us know if you are interested in attending, and if so, if that is dependent on travel being reimbursed.
Please email Julie Greenfield if you are interested in knowing more and/or attending:
Genetic Disorders UK Symposium
Dr Julie Vallortigara, research officer at Ataxia UK, recently gave a talk at the Genetic Disorders UK leadership symposium. Julie gave a presentation about collaboration with industry on drug development, you can listen to the presentation or view the slides by following this link.
The 100000 genomics England project is giving results!
This project led so far to the sequencing of 7.306 whole genomes. Among the people who took part in this project, some saw the opportunity to get a diagnosis by identification of their entire genetic code. This is a case of Brian Paskins, Friend of Ataxia UK, featured in an article about genomics England project entitled “Breaking the genetic code” – you can find this article here.You can also find more information about the project here.