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SPRING 2025 InTouch | 7 NEWS ROUNDUP Pacific Clinical Research Network (PCRN) are inviting adults ages 18–75 with confirmed FSHD Type 1 (Facioscapulohumeral Muscular Dystrophy) to learn about an epigenetic clinical research study at their PCRN clinic in Takapuna (Auckland), run in collaboration with the University of Auckland’s Centre for Brain Research. The study involves a single IV infusion of an investigational therapy. The main goal is to evaluate safety and tolerability; mobility and muscle strength will also be tracked over time. There’s no cost to take part, and time/travel are reimbursed. Participation is voluntary and you can withdraw at any time. About the Investigational Therapy The overproduction of the DUX- 4 protein in muscle cells causes symptoms of FSHD. This treatment is designed to stop the overproduction of this protein and slow symptoms of FSHD. This is a gene therapy designed to deliver potential permanent alterations within the epigenome system directly targeting those muscle cells where the genes associated with FSHD are. The aim of this potential new gene therapy is to reduce muscle degenerations harmful effects and prevent further muscle damage. FSHD Clinical Research Opportunity (Auckland) The investigational treatment/therapy is an IV infusion that is administered by healthcare professionals at PCRN clinics. The treatment is still in the early stages of testing. In the Study, the safety and tolerability of the therapy will be closely monitored, and participants will be closely observed for any side effects or reactions to the therapy. This potential new therapy is designed to target the root cause of FSHD at the genetic level, with the potential to slow or even stop disease progression. The study will help assess whether this approach is safe and effective for patients with FSHD. Reason to participate Your involvement in this study may help advance scientific knowledge that could contribute to the development of a new therapy and better treatment for people with FSHD disease in the future. Joining the study could also give you access to a potential new treatment for FSHD before it is available elsewhere. Interested or want to see if you might be eligible? Please call us on 09 242 3321 or email recruiter@pcrn.co.nz We are deeply saddened to share the news of the passing of Ken Green, former Chairperson of the Muscular Dystrophy Association of NZ. Ken was a passionate and tireless advocate for the muscular dystrophy community. Through his time with us, Ken not only helped guide our mission forward but also inspired others with his kindness, humility, and strength. Our heartfelt condolences go out to Ken’s family, friends, and all who had the privilege of knowing him. Ken Green