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The very successful Second European Conference on Glut 1 Deficiency organised by Matthews Friends was held on 22nd/ 23rd June at the Crown Plaza Felbridge, East Grinstead, Surrey.
The Conference was an opportunity for families and professionals to learn together as well as providing access to professionals working in the field of Glut 1 Deficiency by the families.
Dr Darryl De Vivo
The Keynote Lecture was given by Dr Darryl De Vivo, who is one of the world’s foremost authors on Glut 1 Deficiency as well as being the man that actually discovered Glut 1D as a rare disease in the first place. He spoke about Glut1 Deficiency (1991-2018) and his hopes for future screening for this disease so that patients are not ‘missed’, so that treatment can start as soon as possible which will obviously give them the best possible outcome. It is fair to say that to listen to this lovely man speak is truly inspiring and he was in great demand throughout the 2 days by both families and professionals alike.
There was a varied, informative Scientific Programme on Day 1 where a number of speakers discussed the up to date studies they are working on across Europe on aspects of Glut 1 treatment. This included an overview of the current research and the basic science by Professor Stephane Auvin, the Decanoic Acid Trial presented by Professor Helen Cross and Movement Disorders in Glut 1 presented by Dr Valentina De Georgis.
Day 2 gave the families an opportunity to discuss their own specific issues with the professionals in a workshop setting. These workshops looked at the Ketogenic Diet Therapies in Infants and Paediatrics, with a different group looking at Ketogenic Diet in Puberty and adults.
The other workshops discussed Movement disorders and Triheptanoin and Decanoic acid. The families attending these workshops found them extremely useful and it is becoming quite clear that as our Glut 1D children grow up, the movement disorder is becoming a bigger problem. There was a great amount of discussion as to where future focus needs to be with regards to research and treatment for this but sadly at the moment, it seems our professionals are learning along with our families.
The final session looked at the subject of transition and adults with Glut 1 where a range of experiences across Europe and the USA were discussed.
The exhibition hall was very busy too, with many stands demonstrating very tasty keto samples and it was great to see our Glut 1 kiddies able to sample a variety of goodies.
We also made sure that we had some fun activities for the children attending and our team put on face painting, magician, disco dancing, puppet show, arts and crafts, games, videos and films.
The Conference was very well received with both families and professionals finding it very useful. Much networking was done among the professionals and research projects discussed which can only give further hope for the future treatment of Glut1 Deficiency.
Professor Jeorg Klepper
During the course of this meeting there was also a breakfast meeting among the patient advocacy groups to discuss further a European Federation for Glut 1D and the professionals met in order to discuss a Global Consensus statement for Glut 1 Deficiency, this is being led by Professor Eric Kossoff and Professor Jeorg Klepper, we also recorded several interviews with some of the main speakers which you can see below.
Many thanks to the speakers and the sponsors that made this meeting possible
The 3rd European Conference will be held in Lille, France in 2020.