HI everyone, I just thought I would let you all know about the up coming conference, lots of great stuff happening including presentations from expert doctors, networking sessions, entertainment and things for the children to do. So please sign up and get your tickets asap. Eventbrite Link to get register and get your tickets is : eventbrite.co.uk/e/alex-tlc...
See you there. Karen
Hi Karen
Thanks so much for posting the notice of this important conference. I am also pleased to see that AlexTLC continues to be innovative in the ways it is delivering support to leukodystrophy families.
Some of our friends here on AMN Easier may be unfamiliar with Alex TLC. In short, it began many years as a support group specifically for AMN and ALD. Two or three years ago it expanded its remit to include a wide range of leukodystrophies. However, AMN and ALD remain a key focus of its support. This is reflected in the agenda for the event. From a quick scan, I see sessions on BMT and separate AMN sessions for men and women, as well as gene therapy and a Minoryx update.
Its also worth saying that many, if not most leukodystrophies share symptoms, so many of the problems we exchange ideas about here are also experienced by these illnesses. See alextlc.org/what-is-a-leuko... for some more.
I expect to be registering for many of the sessions. Thanks again for posting.
Chris
Will this be available on video at a later date? I'd love to attend and find the information very pertinent and important. However, being across the pond prevents me to rise to the occasion.
Good thought. I will see what I can do to find out/facilitate....
That'd be wonderful! Thanks!!
A.M. Cortisol
Hyponatremia 
