Today, A Foundation Building Strength announced its receipt of a $600,000 3-year grant from the Chan Zuckerberg Initiative (CZI) Rare as One Project (RAO) project. This grant is aimed at supporting and lifting up the work that patient communities are doing to drive progress in the fight against rare diseases.

Funding will support AFBS to advance the development of an international, patient-led collaborative research network in the area of Nemaline Myopathy, strengthen our organizational capacity, convene our community, and align patients and researchers towards shared priorities.

“For biomedical research in rare diseases to advance quickly and effectively, patients must be full
partners with scientists and clinicians in research. We’re proud to expand our cohort of Rare As One grantees and further support the rare disease ecosystem as we work towards diagnosis, treatments, and cures together.”

Cori Bargmann, CZI Head of Science

CZI recognizes that the diagnostic odyssey is a pressing challenge faced by rare disease
communities as they seek to build strong, diverse, and inclusive communities, as well as move
science forward towards the development of treatments and cures for all those impacted by the
disease. As a result, this grant for AFBS puts emphasis on the potential to address
diagnosis-related research challenges and the importance of addressing diversity and inclusion in
those efforts.

“Patients are experts in their own diseases, and their knowledge and commitment to advancing
progress in their disease areas has the power to center patient priorities and dramatically
accelerate the pace of research. The RAO Network is proud to lift up these efforts by offering new tools, funding, and capacity-building support and training to help these organizations grow and scale.”

Heidi Bjornson-Pennell, CZI Rare As One Program Manager

About A Foundation Building Strength

A Foundation Building Strength is a non–profit organization dedicated to finding treatments for Nemaline Myopathy. Nemaline Myopathy (NM) is a neuromuscular condition that ranges widely in severity, though it typically presents in infancy or early childhood with weakness and delayed motor milestones. Though NM is not marked by progressive weakness, muscles may struggle to support a growing body and therefore could require mobility and/or breathing support. 

When Marc Guillet’s daughter was born in 2008 with NM, he and his wife struggled to find resources that could help, which is why they founded AFBS. Today, he wants AFBS to provide resources and hope to families who receive an NM diagnosis, and to raise awareness about the condition so that no one is left undiagnosed. Guillet’s life is dedicated to helping his child—and thousands of others who live with NM—gain a better quality of life and one day, a cure. 

About the Chan Zuckerberg Initiative
The Chan Zuckerberg Initiative was founded in 2015 to help solve some of society’s toughest
challenges — from eradicating disease and improving education, to addressing the needs of our
local communities. Our mission is to build a more inclusive, just, and healthy future for everyone.
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