Jeanette Erdmann (1965–2023) was not only a brilliant scientist but also a beacon of hope for individuals affected by Collagen VI-related dystrophies in Germany and beyond. Her personal journey with this rare condition fueled her determination to make a difference—not just for herself but for countless others facing similar challenges.
A Personal Mission Turned into Global Impact
Diagnosed with a COL6A2 mutation after decades of uncertainty, Jeanette Erdmann understood the profound struggles of living with a rare disease: the lack of information, limited support, and the absence of effective therapies. Instead of accepting these limitations, she turned her diagnosis into a mission. She worked tirelessly to develop innovative therapeutic approaches, including CRISPR/Cas and RNA-based strategies, paving the way for potential breakthroughs in Collagen VI-related dystrophies.
Jeanette was also a passionate advocate for the rare disease community. As chairwoman of the Schleswig-Holstein chapter of the Deutsche Gesellschaft für Muskelkranke e.V. (DGM), she raised awareness, provided resources, and fostered connections among patients and researchers. Her efforts extended far beyond Germany through her involvement in international collaborations and support networks.
Carrying Forward Jeanette's Mission
Jeanette's work has inspired us to carry her mission forward. At the Institute for Cardiogenetics, we are committed to advancing her vision by developing therapies that could transform the lives of those affected by Collagen VI-related dystrophies.
How you can help
Recipient: UKSH WsG e.V. | Fördesparkasse IBAN: DE75 2105 0170 1400 1352 22
BIC: NOLADE21KIE | Reference: FW14059 Collagen VI Research, HL
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