In September 2018 ZNM – Zusammen Stark held a family conference and care training for children and adults with myotubular myopathy and other centronuclear myopathies in Kassel. Below Jen Bilbao writes about the event.
On this very sunny weekend, from 14 – 16 September 2018, the annual family reunion took place again especially for children and adults with myotubular myopathy and other centronuclear myopathies.
Twenty two families from Germany and Netherlands were presented and got to share their experiences, advises and support for one each other.
Scientific presentations and advice on daily life
On Saturday morning, there was a good mix of scientific presentations and also advice for the daily life with centronuclear myopathies.
Wolfgang Müller-Felber from the Children’s Hospital in Munich, unfortunately could not be in person at the conference. Instead, he gave a speech through a video conference about the current stand of new therapies for myotubular myopathies.
Chris Freitag, Senior Consultant at Dynacure, gave a talk about the clinical trials for a therapy for several centronuclear myopathies.
And then Nina Ackermann, a mom member of our association, shared her experiences on the personal budget offered by the German Health insurance for the treatment care of patients with disabilities.
General meeting and presentation of the new strategy of our Association
Later on, we had the general meeting of our association, where we heard a report on the activities of our association in the last year and also the plans for the future. A summary of our most important results can be found in this pictogram.
During this meeting, Mareen Bockstette was elected by all members as our new deputy chairwoman. A big welcome for Mareen Bockstette to the management board and many thanks to Tracy Ulmer for her great work in the last two years.
Moreover, during this meeting, Jen Bilbao presented the new strategy of our association, which was prepared by various members of the association supported by external consultants. With this, Jen invited all the members to participate actively in different working groups to shape together the future of our association. Four working groups were formed:
- Research funding
- Public relationships and marketing
- Internal knowledge transfer
- Support on everyday life
Members had the chance to organise themselves in the different working groups during workshops and to brainstorm about the objectives and activities during the next months.
Children had also a lot of fun during the family conference
While all adults were busy by the presentations and workshops, the children and teens in our association had a lot of fun. The children program was run by professional experienced staff and all kids of different ages could play in and outside, as we had great weather! The children had much fun with soup bubbles and even went on a treasure hunt.
They also made a beautiful picture as a surprise gift for Holger, the president of our association.
Family trip to the UNESCO World Heritage Site Bergpark Wilhelmshöhe
On Sunday, there was a trip to UNESCO World Heritage Site Bergpark Wilhelmshöhe in Kassel. The guided tour through this UNESCO World Heritage was certainly one of the most impressive experiences in Kassel. Architecture and landscape are here a breathtaking connection.
After checking out at the hotel, we met in the lobby and drove to Bergpark Wilhelmshöhe. At 11am, we started our guided tour of the park, where we learned about the origin of the architectural creations and enjoyed fantastic insights. Then we had a picnic at the ‘Hall of Socrates’ where we enjoyed a speciality of the region.
It was a really nice family conference. There were many opportunities for families to get in touch with each other, to share their experiences, their victories and also their fears. We all support each other in the good times, as in the bad times. Because together we are strong!
ZNM – Together we are strong!
View more photos from the conference on the on the
ZNM – Zusammen Stark Facebook page.