The Annual General Meeting and Family Conference of the German association ZNM – Zusammen Stark! e.V (CNM – Together Strong!) took place over the weekend of 5 – 7 May 2017. Holger Fischer told The Information Point about the event.
This year our annual general meeting and family conference took place in the small village of Tambach in Thuringia, Germany. We were so pleased that 27 families from Germany and Holland participated in the meeting.
On 5 May we had our members’ meeting and we agreed to continue our support to the Myotubular Trust with a donation of 20,000 € to enable Myotubular Trust research grants to find a cure for myotubular myopathy and the other centronuclear myopathies. After 10,000 € a year ago and 15,000 € in January 2017, this time we increased the sum again by 5,000 €. We are grateful to all the donors who made this possible and to the great cooperation with the Myotubular Trust. Also in this meeting, the management board of our association was reelected for the next two years with Frank Schulte as treasurer, Tracy Ulmer as vice-president and myself as president.
In the morning of the next day we had presentations on several topics about daily-life therapies and social insurance issues. In the afternoon, there were interactive workshops on the topics of secretion management, Galileo vibration plate, clinical studies, self-determined life and fundraising. The presentation and workshops were extremely helpful because the members of our association got very useful information, counseling and helped each other.
In the evening we let balloons fly with good wishes and spend a beautiful evening with each other as a family. On Sunday, we all departed thinking about the next meeting that will take place next year. We hope to see you there again.