Lumiio and FSHD Society Launch FOCUS: Groundbreaking Data Platform to Accelerate FSHD Treatment Discovery

First-of-its-kind collaborative system unites global research data to speed path to treatments for facioscapulohumeral muscular dystrophy

CALGARY, AB – June 10, 2025 – Lumiio, in partnership with the Global FSHD Innovation Hub (a subsidiary of the FSHD Society), today announced the official launch of the FSHD Open Collaborative Unified System (FOCUS), a revolutionary platform designed to transform drug development and accelerate research for facioscapulohumeral muscular dystrophy (FSHD).

FOCUS represents a paradigm shift in rare disease research by securely integrating data from industry and academic partners into a single, accessible resource for researchers and drug developers worldwide. The platform is purpose-built to advance discovery, reduce clinical trial failures, and expedite the development of new treatments for people living with FSHD.

“We are thrilled to launch FOCUS for our community, which provides access to data that will facilitate current and future clinical trial designs to test novel therapeutics,” said Lucienne Ronco, Chief Scientific Officer of the FSHD Society. “In support of our efforts, Fulcrum Therapeutics has offered to share all data from their clinical trials of Losmapimod in FSHD. This exceptionally gracious gift is intended to serve as a foundation for FSHD clinical knowledge. We look forward to continuing to build and use FOCUS in collaboration with global developers and researchers, and we thank the patient community for their participation in research which fuels discoveries and progress toward an effective treatment for FSHD.”

By breaking down data silos and creating a unified research ecosystem, FOCUS addresses one of the most significant challenges in rare disease drug development: fragmented information. The platform enables researchers to leverage collective insights, identify patterns more quickly, and design more effective clinical trials, ultimately accelerating the timeline from discovery to treatment.

The launch of FOCUS marks a new era of collaboration in FSHD research, with the platform positioned to grow as additional partners contribute data and insights. This collaborative approach promises to open doors to scientific breakthroughs that will improve the lives of those affected by FSHD worldwide.

To learn more about FOCUS and access the platform, visit https://focus.lumiio.com/

About FSHD

Facioscapulohumeral muscular dystrophy (FSHD) is a genetic muscle disorder characterized by progressive muscle weakness and wasting. It is one of the most common forms of muscular dystrophy, affecting approximately 1 in 8,000 to 15,000 people worldwide.

About the FSHD Society

The FSHD Society is dedicated to accelerating research toward effective treatments and a cure for FSHD while supporting affected individuals and families. The Global FSHD Innovation Hub, a subsidiary of the FSHD Society, works to advance therapeutic development through strategic partnerships and collaborative initiatives.

About Lumiio

Lumiio is a digital health company that specializes in patient-led intelligence and real-world data platforms that accelerate progress in disease areas where better data and better experiences matter most. Lumiio enables better community engagement, research participation, and high-quality insights for patient organizations, researchers, and life sciences partners.