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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.

Funding rare diseases: your support fuels research, drives innovation and brings us closer to treatments and a cure

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 board

The foundation’s board has three members.

Chair
Harrie Steenbakkers
Treasurer
Berith Behrens-Selling
Secretary
Jan-Willem Behrens

Use of funds and continuity

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.

Policy plan 2026 to 2030

The board has a policy plan for the period from May 2026 to May 2030. These are the main lines.

Vision
To build together a future with more understanding, better care and real hope for everyone with Limb-Girdle muscular dystrophy.
Mission
To raise awareness, support patients and families and accelerate scientific research, so that effective treatments and ultimately a cure become possible.
What we do
We want to offer an up-to-date overview of ongoing clinical trials for LGMD and share information about aids for people living with LGMD.
Fundraising
Through business networks and sponsors, wealth funds and other support funds, biotech investors, local sponsor campaigns, crowdfunding and media attention.
Accountability
We share regular updates on the website and through social media. Every year we report income and expenses in a financial annual report on this website. In the coming years we will look into whether CBF recognition is feasible.

Activity report 2026

This is what the foundation has done so far.

Founding
The Together for Limb-Girdle Foundation was established on 30 April 2026.
ANBI
The Dutch Tax Administration has recognised the foundation as an ANBI, effective 30 April 2026.
Website
The foundation’s website is live, with the stories of Floris and Tobias.

The first financial annual report will follow on this page after the end of the first financial year.

Continuous support of clinical development

We do not stop once a single trial begins

Our ambition is to turn hope into treatment and treatment into accessibility for as many people with Limb-Girdle Muscular Dystrophy as possible.