We have created a new poster with the important facts of our association. Take a look!
Since our foundation in June 2015 until February 2019, the number of members has risen sharply from 28 to 133 people. We represent people from Germany, the Netherlands and Austria. More than two-thirds of our members have a MTM1 mutation themselves or have a close family member with an MTM1 mutation. Almost 20% have a CNM condition due to a RYR1 mutation, followed by about 8% having a mutation on the DNM2 gene and about 2% having a SEPN1 mutation.
The association supports the members with a variety of offers, e.g.
- We moderate a permanent internal online forum on Facebook, where all members can exchange ideas, and give advice and courage.
- We inform about CNM on many online channels, such as on our homepage, our Youtube channel, on Facebook, Twitter, Instagram and with the help of live webinars, as well as on our annual family conference with children’s program.
- We finance further education for our members, so that they can act as informed patients in their own situation and at the same time can better support the association.
- We give courage in difficult situations.
- We offer legal advice through our partner Bundesverband Selbsthilfe Körperbehinderter e.V. (BSK) and the German Society of Muscular Diseases e.V (DGM).
- We invest directly in research for CNM. Since 2015, we have already provided 124,000 euros for research.
- We are networking internationally with several organizations that work for people with CNM: e.g. the Myotubular Trust and The Information Point for Centronuclear and Myotubular Myopathy in UK, MTM-CNM Family Connection, Joshua Frase Foundation, RYR1-Foundation and WillCure in the USA, Pequeños Superheróes in Spain, Foundation Oswoic Miopatie in Poland und F.I.M.M. – Famiglie Italiane Miopatie Miotubulari e Centronucleari MTM-CNM in Italy.
- In addition, we cooperate with other organizations that fight for people with rare (muscle) disorders, such as Eurordis, Treat-NMD, Deutschen Gesellschaft für Muskelkranke e.V., and Bundesverband Selbsthilfe Körperbehinderter e.V. (BSK).