1965 - 2019
I met Erich Maurer in early 2013. Before Myotonic had Facebook groups, it operated a closed online portal that functioned like a bulletin board with threaded discussions. Erich had posted that he was looking for other gay men with DM1. For a week or so I checked the post and no one responded. Finally, I sent him a message that I was a gay woman with DM1. And thus a lovely correspondence began.
Through email, (Erich hadn’t yet ventured onto Facebook) he told me about his life in Basel, Switzerland with his longtime partner, Hari. And I shared my life. We were close in age, had no siblings, and enjoyed many similar activities such as world travel. Later that year my partner, Jessica, and I traveled to Spain for the International Myotonic Dystrophy Consortium (IDMC) biennial research meeting. Erich wasn’t able to attend the conference but he flew to Barcelona to meet us. The following year we met in Iceland for a few shared days of travel. In 2015, Erich and Hari showed us around Switzerland.
I’d like to say that I initiated Erich into the world of support group facilitation, but the truth is he had all of the necessary ingredients – a desire to connect and help others, the capacity to learn more about the disease by interacting with doctors and researchers, and creative talents that allowed him to reach out virtually as well as in-person. I just gave him a little push. He was involved with patient support groups in France, Germany, and Switzerland.
“Erich was driven by a belief that people with DM have unique contributions to offer the world,” says Mike Hamlin, a contributor to the Our Voices, Our Lives website. “And Erich felt the DM community needed a global platform to make those contributions. The site Erich established served as just such a platform. On the site, personal stories and interviews from DM community members in any of 26 languages can be translated into French, English, or German and posted for others in the DM community to read and offer a response.” Mike continues, “Erich’s goal was to help ensure that no member of the DM community felt isolated.”
Mindy Kim, another contributor to Our Voices, Our Lives, recalls reading a post from Erich about a project he was considering to connect people with DM from all over the world, noting that she was impressed by his vision. When Erich requested volunteers, Mindy quickly responded by submitting her own story. “I built the English version of the website, created flyers, postcards, and newsletters (with Erich’s content), and ran a vendor table for the project at the 2018 Myotonic Annual Conference in Nashville.” Mindy continues, “I believe Erich’s legacy lives on through the continued work on his vision of Our Voices, Our Lives.”
- Leslie Krongold, Ed.D., Myotonic Support Group Facilitator