The native language of the project's leaders is German. For the success and acceptance of the project, it is important that the content of our websites and our communication are as linguistically correct as possible. We look forward to working with our friends from other countries in this effort.
Germany: Bernhard, Baden-Württemberg
Until Myotonic Dystrophy DM 2 (PROMM) 2016 turned my life upside down within months, the term of this disease did not exist in my vocabulary. Neither my doctors nor I came up with the idea that illnesses from previous years could be related to them.
I met Erich in a support group in Germany. He gave me many valuable and helpful tips that helped me to accept my diagnose. With the knowledge of being one of many, I founded a Facebook group for individuals affected by an incurable muscular disease. At the end of 2017, I worked for the DGM (the patients organisation in Germany for individuals affected by a neuromuscular disorder) and since 2018 I am the support group facilitator "Myotonic Dystrophy Baden-Württemberg Süd" in southern Germany.
USA: Mike, Florida
I live with Myotonic Dystrophy in a sunny apartment on the island of Key West, the southernmost town in the United States. I moved here a few years ago for the warm weather – cold temperatures and myotonia make my muscles practically useless – and to know more of the inspiring, varied, and fun humans who also love this tiny island of palm trees and iguanas. My home had been in Washington, D.C. for more than 50 years. It was a big move for me to come here by myself. I am grateful to have been able to do it. My life remains an excellent adventure because of it, even as I miss my friends in our Myotonic Dystrophy support group that we launched together in Washington.
Erich is one of the first inspiring and fun people I met after moving to Key West.
Everyone has his own story. Every story is different. Every story is characterized by ups and downs. Each story can and will show us how others learn to live with something none of us wanted.
The idea of Erich to collect these stories and to put them together into a book inspired me from the beginning. We can all learn from the stories. I am happy to support the project and would like to help to give a voice to the global community of those who are affected by Myotonic Dystrophy.
Germany: Steffi, Bavaria
I am one of the "lucky ones" who already knew what to expect before the onset of the first symptoms: My mother was affected and I was genetically tested for Myotonic Dystrophy type 1 in early adulthood to have certainty.
Maybe this is one of the reasons why I learned relatively swiftly to accept things as they are. This has helped me not to just surrender to my fate but to work very actively on myself in order to get the most out of my life.
In early 2017, I overcame my massive shyness and I have been running a small YouTube channel since then. Among other topics presented in my videos, I use this media to educate and to inform others about Myotonic Dystrophy and, above all, to encourage those affected by DM. I know from my own experience, how desperately some of us are looking for information after being diagnosed with DM. It is my personal concern of mind to help closing this gap of knowledge.
USA: Mindy, North Carolina
As a dancer when I received my diagnoses of DM1 in 2010 I was devastated. As a wife, a mom, a business owner, dance teacher and activist my life was full and on an excellent path, as some twists and turs were expected this wasn’t one of them.
In the years since I have managed to find new endeavors and modify some old ones, so I can continue a life I like. I am more politically active than ever, I’ve even marched a couple of times, which is a huge challenge with DM. I still teach dance, but it is inclusive dance and my classes are chair classes. I am also huge advocate for the DM community a run and online monthly support group meeting and I have a huge online presence which has helped me meet amazing people who understand. I run fundraisers (from time to time) for the MDF and with my unwavering optimism I have
Finally, Erich had found me through this platform and informed me about his project. It is a great honor and pleasure for me to be able to support him within the scope of my possibilities in this great cause.
A mutual friend suggested that we connect. So, connect we did, although in an unexpected way. With Erich in Switzerland and me in Key West, we introduced ourselves through internet video calls and email messages. During our talks, Erich shared with me his belief that hope can happen when people feel they are not alone.
He also described to me his dream for reaching out to people affected by Myotonic Dystrophy wherever those people may be. I am energized by the opportunity to contribute to his effort. The information on this site describes how you, too, can help. I look forward to working with you and the Our Voices team.
been called the “DM Cheerleader” however, I prefer the title attached to all of us living with DM, Warriors.
I am looking forward to working on this project and making it accessible to everyone. We know our storied and have shared them with many but the rest of the world needs to know and understand as well and with Erich’s vision he is making that happen. I am proud to be a part of it.