Community Weekend Presentations

Presentations given at the ALD Life Community Weekend 2018 are available here. These are the presentations made by our speakers, with notes added by ALD Life staff.

Click on the presentation subject to access the document:

SATURDAY morning



09.45 10 minutes ALD Life Intro Sara Hunt
09.55 20 minutes Management of Symptomatic Boys Dr Alasdair Parker
10.15 40 minutes BMT/gene therapy Dr Robert Chiesa
10.55 20 minutes Q&A
11.15 30 minutes Break
11.45 20 minutes Monitoring asymptomatic boys Dr James Davison
12.05 20 minutes Research on gene therapy for AMN Dr Florian Eichler
12.25 20 minutes ALD Connect work Kathleen O’Sullivan Fortin
12.45 15 minutes Q&A
13.00 1 hour Lunch
SATURDAY afternoon 14.05 20 minutes Update on New Born Screening (NBS) in USA Dr Ann Moser
14.20 20 minutes  Genetic Alliance work to address the mutual issues for rare disorders seeking NBS in the UK Jayne Spink, Genetic Alliance
14.40 20 minutes Sports and ALD Dr Gerald Raymond
15.00 15 minutes Genetics and ALD Dr Gemma Chandratillake
15.15 30 minutes Q&A
SUNDAY morning 09.45 10 minutes Welcome Karen Harrison
09.55 20 minutes Addison’s Disease management Dr Ved Arya
10.15 20 minutes Bladder issues for AMN patients Dr Sara Simeoni
10.35 20 minutes Life after bone marrow transplant (BMT) Rhys Long
10.55 20 minutes Q&A
11.15 30 minutes Break  
11.45 20 minutes  Female symptoms Dr Woulter van Ballegoij
12.05 20 minutes Symptom management for adult males and update on adult BMT in UK Dr Robin Lachmann
12.25 10 minutes Priorities for AMN men Raremark
12.35 10 minutes ALD – the Italian experience Valentina Fasano
12.45 15 minutes Q&A
13.00 1 hour Lunch
SUNDAY afternoon 14.00 10 minutes Transition to adult services Dr Elaine Murphy
14.10 15 minutes The ALD Database Dr Stephan Kemp
14.25 15 minutes NeuroVia NV1205 clinical trial Dr Masoud Mokhtarani
14.40 15 minutes Minoryx MIN-102 clinical trial Dr Uwe Meya
14.55 25 minutes Research Q&A Dr Gerald Raymond, Dr Robin Lachmann, Prof Colin Steward, Dr Andrew Lux, Dr Robert Cheisa, Dr Elaine Murphy, Dr Florian Eichler, Dr Ann Moser, Dr Woulter van Ballegoij, Dr Stephan Kemp, Dr Uwe Meya, Dr Masoud Mokhtarani, John Henderson, Giovanni Ferrara and Mario Brkulj


15.20 10 minutes Closing remarks Prof Colin Steward




Image result for big lottery fund         


Unable to display Facebook posts.
Show error

Error: (#4) Application request limit reached
Type: OAuthException
Code: 4
Please refer to our Error Message Reference.