Today, on Donavon Decker’s birthday, we remember not only the person he was, but the strength, honesty and determination he brought to our community. Although Donavon passed away a year ago, his voice continues to resonate through his film Unfinished Fight against LGMD and through the work we carry forward together.

As a valued member of the LGMD CAB, Donavon helped shape conversations that placed lived experience at the heart of research and care. His perspective challenged us, inspired us and reminded us why this work matters. His legacy remains present in every step we take toward better understanding and better treatments for people living with LGMD. We are deeply grateful that his wife Kirsten Decker will be joining the LGMD CAB board, continuing Donavon’s commitment and keeping his fight for a cure alive within our shared mission.

Voices of the LGMD Community: Join our Cardiac Care Project

Our first important initiative for 2026 reflects that same spirit of advocacy. The worldwide Cardiac Care Project is an international patient survey designed to capture the lived experiences of people across multiple LGMD subtypes. The survey aims to identify patterns in access to care, treatment satisfaction and daily quality of life, while highlighting differences between countries and healthcare systems.

The results will contribute to a scientific publication and will be presented at the ENMC workshop on cardiac care in November 2026. By bringing the patient voice directly into these findings, we hope to improve clinical communication and strengthen patient engagement in future research. The outcomes will also support the development of a dedicated masterclass for cardiologists treating LGMD patients, created in partnership with Treat NMD. All responses will be securely anonymised before analysis.

In remembering Donavon today, we also invite you to stand with us and help shape better cardiac care for all people living with LGMD.
We ask for your participation in the survey to have a true global perspective, please reach out to us at web@lgmdcab.org