Scientific Conference and Family Conference

8 and 9 June 2018

The second MLD Support Association UK Scientific Conference and Family Conference took place at Wyboston Lakes in St. Neots on Friday 8 June and Saturday 9 June 2018. Both Conferences were once again well attended and a great success. For those who were unable to attend, please find below downloadable notes on the extremely interesting lectures.

The focus was on Support and Care of MLD sufferers and their families, and enabled families directly affected by MLD to meet and share valuable information. There were presentations on support and care, as well as an update on current and future research, followed by family discussions, and networking sessions. A crèche for children and affected adults was again provided. Lunch on Saturday was followed by free time for families to mix.

We were delighted that Dr. Anupam Chakrapani, Consultant in Paediatric Metabolic Medicine at Great Ormond Street Hospital was able to join us as well as Dr Ming Lim, Consultant Paediatric Neurologist at the Evelina Children’s Hospital. Also attending was Carol Hall of L’Arche Kent, a Community with a wide experience of supporting young people with Learning Difficulties. Other experts in the field of MLD/Leukodystrophies also gave presentations.

Conference notes

Brain for Brains Lecture Notes
Caring for the child with MLD Lecture Notes
Derek Burke and Prof Simon Heales Lecture Notes
Infammatory Mechanisms in Paediatric Neurodegenerative Disorders Lecture Notes
Investigating Leukodystrophies in Adults Lecture Notes
Overview of MLD and Clinical Trails Lecture Notes
Planning for a National Leukodystrophy Service Lecture Notes
The Effects of Anaesthesia in Major Sugery for patients with MLD Lecture Notes

 Wyboston Lakes, St Neots

Vivienne Clark Trustee and Chair, MLD Support Association UK

Vivienne Clark, Chair – MLD Support Association UK

Professor Simon Heales, Head of Laboratory Services at GOSH, speaking at MLD Support Association UK Conference

Prof Simon Heales – Head of Laboratory Services at GOSH

r Ming Lim – Consultant Paediatric Consultant at Evalina Children’s Hospital London

Dr Ming Lim – Consultant Paediatric Consultant at Evalina Children’s Hospital London

Slide from Dr Ming Lim’s presentation

Dr David Begley – Vice-President and Scientific Director Brains for Brain Foundation

Dr David Begley – Vice-President and Scientific Director Brains for Brain Foundation

A crèche for children and affected adults was provided

Dr Germaine Pierre – Paediatric consultant at University Hospitals, Bristol

Dr Germaine Pierre – Paediatric consultant at University Hospitals, Bristol

Slide from Dr Germaine Pierre’s presentation

Dr John Livingstone – Leeds University Teaching Hospital

Dr John Livingstone – Leeds University Teaching Hospital

Staff from L’Arche Kent with MLD sufferer Scott Clark

Staff from L’Arche Kent with MLD sufferer Scott Clark

Dr Christine I Dali – Paediatric specialist involved in trials of Enzyme Replacement Therapy in Denmark

Dr Christine I Dali – Paediatric specialist involved in trials of Enzyme Replacement Therapy in Denmark

Dr Robin Lachmann MLD Support Association UK

Dr Robin Bachmann – Consultant in Metabolic Medicine University College London Hospital

MLD Support Association UK Family Conference, Professor Tim Cox

Prof Tim Cox – Emiritus Professor of Medicine, University of Cambridge. Patron of MLD Support Association UK

Dr Anupam Chakrapani – Consultant in Paediatric Metabolic Medicine at GOSH

Dr Anupam Chakrapani – Consultant in Paediatric Metabolic Medicine at GOSH