We are currently at the early stages of organizing a Scientific Conference for Autumn 2022 in London. This will allow discussion on the innovative new treatment of Gene Therapy which is now available on the NHS for pre-symptomatic Late-Infantile MLD and pre-symptomatic and early-symptomatic Early Juvenile MLD sufferers.
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.
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