A Foundation Building Strength
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. 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.
As part of the Rare As One network, A Foundation Building Strength aims to develop deeper connections with all stakeholders in their community, as well as build collaborations with others in the rare disease community.