Alex ALD

[3WheelWonder]

Looks like they had a big get together in the UK

youtube.com/playlist?list=P...

[COwithAMN Administrator AMN EASIER Volunteer]

Thank you very much for posting this. It's been on my "to-do" list ....

There are many useful video presentations here, all from the recent Alex TLC conference.

It's worth mentioning that Alex TLC now supports leukodystrophies in general (The Leukodystrophy Charity), though its experience over many years has been built up dealing with ALD and AMN.

I haven't watched them all, but I'll comment on two or three:

#1 Robin Lachmann is a good introduction to AMN for newly diagnosed people.

#3 HSCT adult stem cell transplant is an overview of how this works and risks/benefits

#11 Florian Eichler, support for women with ALD looks good - haven't yet watched

#22 Florian Eichler again, gene therapy for AMN, haven't watched it, looks great.

All in all, some very informative material here.

Please post any reactions/opinions.

Chris

[3WheelWonder in reply to COwithAMN]

hi Chris, you’re in the UK, right? Did you go to this event?

[COwithAMN Administrator AMN EASIER Volunteer in reply to 3WheelWonder]

No, unfortunately I didn't feel up to going to Birmingham from London where I live. Some others on here did go so perhaps we might get some comments.

[monmon]

I did and it was super (and it fell like ages since the previous, pre-covid, one). It’s a great chance to meet the people that work for us (Alex TLC + the professionals) and the affected community (sorry Chris you didn’t make it - we missed you