Did you know that September 25 is International Ataxia Awareness Day? It takes place on September 25 of each year to increase public knowledge and understanding of all types of ataxia. On this International Ataxia Awareness Day (IAAD) we are encouraged by all the awareness that has been generated this week around DRPLA.
A powerful article was published by BBC Wales about DRPLA and how it impacts families in Wales. When it first came out, this article reached #10 on the BBC website’s most-read list – a great boost for awareness and recognition!
We are pleased that the BBC showed interest and included our perspective in their work, with Dr. Silvia Prades acting as our spokesperson. Read the article here.
On Monday, BBC Wales News opened the broadcast at lunchtime and again in the evening with a short story on how DRPLA has affected people with the condition and the struggles families have faced in obtaining the right diagnosis. You can watch it here.
While media coverage has focused on Welsh families, sadly this is also the reality for other families around the world.
Dr Silvia Prades was invited to talk at Radio Wales Drive about DRPLA, our work and the vital importance of raising awareness of this devastating condition. You can listen to her interview on iPlayer, start playing from 1:13:40.
Help us raise awareness about DRPLA this IAAD
To continue the momentum going and continue spreading awareness, share this page on your social channels and with your friends. Awareness is not just about visibility, it is also about driving earlier diagnosis, stronger support networks, more research, and better care.
Support for people with DRPLA and family members
If you have any questions about DRPLA and the research news we share, you can always contact CureDRPLA by email at info@curedrpla.org. A member of our team will provide a prompt response and if we cannot help directly, we will do our best to guide you toward other useful resources
CureDRPLA has a partnership with Ataxia UK who provide a much wider range of services for people with ataxia. This is especially relevant for those of you based in the UK.