Hi, I’m Jeno. I am a 24-year-old (non-flying) Dutchman and I have the Diagnosis, MTM-1. I have been with ZNM-Zusammen Stark! e. V. since 2015, together with my mother, Marian Beelen. Within the association I am mostly involved in the pharmaceutical company contact group. Other than all that I try to help out the association…

Hello, My name is Ella and I was born prematurely at the end of 2021. For a long time, my symptoms were blamed on being a premature baby until I was diagnosed with titinopathy at the beginning of 2024. I am a cheerful, strong-willed and very bright mouse who likes to get up to lots…

My parents, Jenny (30) and Benjamin (33), and my big sister Dahlia (6) are everything to me. Together we overcome every hurdle. I was born in August 2022 and was fine for the first four months. I went to hospital for the first time in December. Doctor visits followed and my mom fought like a…

Hey, I am MAX. (nickname Maxi King, big superhero or Grinsekeks) 2018, I was born with my special effect and since then, I have been melting the hearts of my caregivers and those of mom Christine and dad Chris. I have a younger brother called Maik and we live together with our dog Emma in…

Hello, I am Ute, 58 years old. With increasing symptoms in recent years, the defect on the RYR-1 gene was found during the search for the cause in 2020 and after a biopsy in 2023 the diagnosis of central core myopathy (CCD) was made. I live with my husband Thomas in a village called Milz…

We are the Keuscher family from Butzbach. Mom Sandra, dad Rory with the children Marla (12) and Noam (8).Marla lives with RYR1. We only received the diagnosis when Marla was 4 years old. She has limitations when walking long distances, climbing stairs and jumping. Her biggest hobby is painting and drawing. We always look forward…

My name is Petra and I live in Herzogenaurach. I was born as a twin in 1981 and have a defect in the DNM2 gene. My twin sister is not affected. My brother, who is 4 years younger, is also unaffected. I had Bobath physiotherapy as a child and my problems were blamed on the…