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COMMUNITY WEEKEND 2018

CROWNE PLAZA, DOCKLANDS, LONDON

4 TO 7 MAY 2018

 

BOOKINGS ARE NOW CLOSED FOR THIS EVENT.

  Friday Fun      

The ALD Life Community Weekend brings together ALD and AMN sufferers and their families, alongside doctors, researchers and scientists from around the world to support each other and discuss how ALD and AMN affects them. It gives sufferers and their families the chance to talk freely about mutual issues and focuses on activities designed to put attendees at ease and encourage interaction, such as an ice-breaker quiz, children’s activities for all ages and abilities, workshops on condition management and self help, research and treatment updates. It also gives medical professionals the opportunity to hear directly from those affected and presents a rare opportunity to progress research ideas and best practices for treatment. Confirmed speakers include:

Professor Gerry Raymond, University of Minnesota
Dr Anne Moser, Kennedy Krieger Institute
Professor Colin Steward, Bristol Children’s Hospital (now retired)
Dr Robin Lachmann, National Hospital for Neurology and Neurosurgery in London
Dr James Davidson, Great Ormond Street Hospital in London
Dr Ved Arya, endocrinologist at Kings College Hospital in London
Dr Alasdair Parker, paediatric neurologist at Addenbrooke’s Hospital in Cambridge
Dr Andrew Lux, paediatric neurologist at Bristol Children’s Hospital
Professor Stephan Kemp, Academisch Medisch Centrum Universiteit, Amsterdam

Please click here for the detailed agenda.

It truly is a lifeline for the ALD and AMN community, best summed up by past attendees:

“The charity weekend to me is my ALD family who I sooo look forward to seeing, it’s a time for us to get together to laugh, cry, think and learn from each other. I love these people so much. My son is 10 years old now and every year asks “Is there a charity weekend this year, I really want to see my friends?”.… the fantastic effort that the ALD Life team put in is phenomenal, we really couldn’t imagine not having that catch up time in our lives.”

“It never ceases to amaze me that “we – the ALD Life family” manage to have such fun amidst such dire situations”

“It is a special meeting with special people.”

“I must thank you … for a wonderful weekend.  It could not have been better.”

“Thanks for the weekend … – I met someone who had the exact same experience I had with my AMN symptoms… Feel like I’ve got some of my mojo back. Thanks again.”

“There was a great atmosphere … Very enjoyable. Parents interacted freely about their particular journey with ALD. As a parent – new to this condition – I felt understood, and had the chance to overcome the isolation, which had nearly beaten me over the last year.”

ALD LIFE THANKS OUR GENEROUS SPONSORS FOR THEIR INVALUABLE HELP WITH THIS IMPORTANT EVENT

         

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