April 04, 2016,
ELA Meeting 2016
Families – Scientists
The European Leukodystrophies Association (ELA) held its annual families and scientists meeting earlier this month, on April 2nd and 3rd in Paris, France.
Below is a personal account of the ELA meeting by our Board member, Ben Lenail:
I just came back from the annual European Leukodystrophy Association (ELA) meeting in Paris. I attended the lunch and medical workshop on X-ALD on Saturday April 2. This was my fifth consecutive year attending.
The attendance at the ELA meeting is now at 500+. The meeting has moved to a new location, the Pullman Paris Bercy hotel, which has more space, better facilities for disabled folks, and better rates. The attendees are mostly French, with a good turnout from Belgium, Spain, Switzerland, Poland and many other countries.
I purposely sat with new folks during the lunch. Each family has a heart-breaking story. A mother had lost her daughter to metachromatic leukodystrophy at the age of 7 (after onset at the age of 4 and diagnosis at the age of 5). An elderly couple was taking care of their daughter, now 40 years old and in a vegetative state, who started showing severe neurological symptoms at the age of 32 from an undetermined leukodystrophy. The parents described how she had been a beautiful young woman, who was trilingual, excelled at the piano, and had a great career and many suitors. Read full article…