Transparency
Financial Accountability
We believe that trust is built through transparency. Here you can find how we are structured, how we manage funds, and what happens with your support.
We believe that trust is built through transparency. Here you can find how we are structured, how we manage funds, and what happens with your support.
The foundation has an unpaid board and will have an unpaid Supervisory Board. Board members and members of the Supervisory Board receive no remuneration for their work. Only travel and accommodation expenses actually incurred are reimbursed.
During the start-up phase, the foundation is building up capital for specific research and clinical development programmes for Limb-Girdle Muscular Dystrophy.
From 2027, the foundation is expected to contribute financially to a Phase 1 clinical trial for LGMD 2A/R1 and any follow-up programmes within the LGMD field.
The foundation deliberately keeps its overheads as low as possible so that the vast majority of the funds received are channelled towards its objective.
The Together for Limb-Girdle Foundation aims to accelerate the development of effective treatments for people with Limb-Girdle Muscular Dystrophy, with a particular focus on LGMD 2A/R1.
In the initial years, the foundation will focus primarily on raising funds for a specific Phase 1 clinical trial for LGMD 2A/R1 being developed by the French research institute Généthon and its company Atamyo Therapeutics.
Once this trial has started or has been completed, the foundation will continue its activities to secure additional funding for follow-up research, subsequent phases of clinical development (Phase 2 and Phase 3) and other promising research and treatment programmes in the field of Limb-Girdle Muscular Dystrophy.
The foundation aims to allocate funds as effectively as possible to projects that demonstrably contribute to accelerating the availability of effective treatments for patients with LGMD.
Our ambition is to turn hope into treatment and treatment into accessibility for as many people with Limb-Girdle Muscular Dystrophy as possible.
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