From 11 to 13 October, many members of the ELA family gathered in Hann. Münden to interact with doctors and gain new knowledge. The 2019 meeting brought together the largest number of members since the founding of the Bundesverein Leukodystrophie Association and its successor, ELA Deutschland eV. Thank you to them for joining us in order to strengthen us now as a Leukodystrophy Club.
On Friday, the programme started with a joint dinner and on Saturday after breakfast with an exchange among people affected by the disease. Every year, people affected by AMN, families with children suffering from various leukodystrophies and relatives of those affected find an attentive ear to their situations in various workshops.
For children, there was also special support this year. In particular, they were given crafts, games and make-up. We thank all the supervisors for their great commitment.
After lunch together, the workshops on various leukodystrophies, among other related topics, took place. The workshop on nutrition in the NMA also attracted a lot of interest. For the first time, different foods were tested for the long-chain fatty acids C22, C24 but especially C26.
After dinner, a film was shown to the children and the adults had time for informal discussions.
On Sunday, many members came to the assembly for the elections. The full board of directors was confirmed (Achim Kaisinger stepped down at his request). We thank Achim and his wife Katja for their commitment over the years and wish them an excellent retirement from ELA. The board is now led by the first chairperson, Dawn Gelhart.
Many thanks to all the organisers of this event for making it worthwhile for families, especially those who travel a long way to make it.
The next family reunion will take place from 9th to 11th October in Hann. Münden.