Thank You, VoLo Foundation: A Generous Gift Toward an MFM13 Treatment

‍

We are proud to share that Cure MFM13 has received a generous grant from the VoLo Foundation. This support marks an important step forward for our small community, and we are deeply grateful for the trust it represents.

For an ultrarare disease like MFM13, every contribution matters. With around 60 patients described worldwide and no approved treatment, progress depends entirely on the people and organisations willing to back research before there is a guaranteed return. VoLo Foundation is one of those backers, and we want to say so clearly: thank you.

‍

Who is the VoLo Foundation?

Founded in 2014 by David S. Vogel and Thais Lopez Vogel, the VoLo Foundation is a private family organisation that exists to accelerate change and global impact by supporting science-based climate solutions, enhancing education, and improving health.

Their impact speaks for itself. The foundation has awarded more than $83 million in grants since 2014, including over $27 million in 2025 alone, supporting 113 projects in that year. A significant share of that giving goes to health, humanitarian, and community-building work, alongside their well-known environmental programmes.

‍

Why this partnership makes sense

VoLo Foundation funds science-based solutions to hard problems. So do we. Cure MFM13 exists to turn careful science into a treatment for a disease that currently has none, working alongside academic partners, clinicians, and the families living with MFM13. Our approach is grounded in the same values VoLo champions through its Health programme: respect for evidence, support for research, and the belief that even the most difficult problems are worth solving.

MFM13 is a slowly progressive, autosomal dominant muscle-wasting disorder caused by mutations in the HSPB8 gene. It typically appears in young adulthood and gradually erodes muscle strength. Because so few people are affected, it sits outside the reach of most commercial drug development. Philanthropic support is what makes early research possible, and what eventually makes a treatment thinkable.

‍

What this gift makes possible

This support will help us build the scientific and regulatory groundwork needed for drug development, and strengthen the resources we provide to patients and families. In a field where small organisations carry large ambitions, funding like this is what moves the work from planning to action.

‍

With gratitude

To David, Thais, and the entire VoLo Foundation team: thank you. Your generosity brings us closer to a future in which MFM13 no longer defines the lives of those who carry it. We are honoured to have your support, and we look forward to sharing the progress it helps us achieve.

‍

To learn more about the VoLo Foundation and its work, visit volofoundation.org.