Knowledge, Connection, and Hope
This year’s DGM FSHD Germany Patient Day was a resounding success, bringing together a vibrant mix of familiar faces and many new participants. The atmosphere was one of curiosity, compassion, and collaboration—true to the spirit of Project Mercury, which aims to empower individuals with FSHD through knowledge and community.
“The Patient Day was not only informative but deeply inspiring. It reaffirmed the importance of community, shared learning, and the pursuit of better care and treatment options.” – Bine Haase, DGM FSHD support group lead.
Here are some of the highlights from the program:
Navigating Care in 2025: Updates on Nursing Services
Marion Haase opened the day with a highly relevant presentation on upcoming changes to nursing benefits in 2025, including updates to preventive care services. Her insights helped clarify what patients and families can expect and how to prepare for the evolving care landscape.
Neuroathletics and Practical Positioning: Empowering Movement
Gunnar Hoffmann delivered two engaging talks. The first introduced neuroathletics, a therapy form gaining traction in elite sports, which can be adapted into physiotherapy and occupational therapy for individuals with FSHD. His second session was a hands-on demonstration on safe positioning techniques, showing how to transfer someone from bed to wheelchair using both the patient’s remaining strength and ergonomically safe methods for caregivers. This was especially appreciated by both patients and their families.
Staying Active with FSHD: Sport and Adaptation
Dr. Hans Langer, a sports scientist, led the family support circle and gave a compelling talk on sports for people with FSHD. He shared practical advice on how to adapt exercises and activities to stay physically active without overexertion—an empowering message for many attendees.
Antioxidants and FSHD: Promising Research
Prof. Marie Christine Dabauvalle presented exciting findings on antioxidant supplementation for people with FSHD, building on the well-known Montpellier study. While the latest data is still under embargo, the upcoming publication promises to offer new therapeutic insights. The audience showed great interest, especially in the potential for immediate positive effects.
Genetics Made Simple: The Path to Diagnosis
Prof. Zenker captivated the audience with his dynamic presentation on the diagnostic journey in FSHD, likening it to finding a needle in a haystack. Through clear visuals, humor, and relatable metaphors, he made complex genetic concepts accessible to all.
Celebrating Research: The Ulrich-Brodeßer FSHD Research Award
Saturday evening featured the Ulrich-Brodeßer FSHD Research Award ceremony. The first prize was awarded to Dr. Teresa Gerhalter and Dr. Stefanie Mayer for their work on quantitative MRI as a biomarker in FSHD progression. The second prize went to Dr. Meyer for her study on multispectral optoacoustic tomography. Both projects represent significant strides in FSHD research and were met with enthusiastic applause. Read more about the FSHD Research Award >>
Looking Ahead: Clinical Trials and the FBI Registry
Prof. Benedikt Schoser closed the event with an interactive session introducing the Friedrich-Baur-Institute (FSHD Biobank Initiative) and its patient registry. He also provided updates on current and upcoming clinical trials, including promising studies from Avidity, Arrowhead, and Roche.
________________________________________
As we continue our work through Project Mercury, we remain committed to amplifying voices, sharing knowledge, and driving progress for everyone affected by FSHD.
Your support can help the DGM FSHD Group improve the national patient registry, strengthen advocacy, and expand its network of care and research.
Join us in powering patient-led progress. Support DGM Germany today and include “FSHD” in the field “Freie Eingabe”.