Hi everyone, I hope you're all well. My names Olivia, I'm a trustee of Alex TLC and I will be undertaking the admin role on this page. Hopefully I will be able to answer any questions you have, direct you to certain helpful resources or just monitor and moderate any conversations you have between each other in order to make sure that all information given is correct.
A bit about me: I am a young carrier of ALD - I recently did a vodcast about this topic with Karen, the Support Manager of Alex TLC, so have a watch of that if it's of interest to you (you can find this on the facebook page). I have also lost my Dad and Uncle to cerebral ALD, and of course watched my Dad live with AMN for all of my life. I became a trustee so that I could use my experience to be a voice for the beneficiaries on the trustee board, as well as push for more research into female carriers.
Please use this platform to ask any questions you like, and discuss any issues/feelings that you have regarding all things Leukodystrophy. Let's help each other.
I have 3 sons who have just been diagnosed with ALD