Community Mourns the Loss of VCP Advocate Eduardo Pinheiro
The VCP disease community is mourning the loss of Eduardo Pinheiro, a longtime advocate and founding board member of Cure VCP Disease. Pinheiro passed away recently, leaving behind a legacy of compassion, advocacy, and courage.
A resident of São Paulo, Brazil, Pinheiro was first affected by VCP disease—a rare genetic condition that causes progressive muscle weakness—more than a decade ago. Despite the physical challenges he faced, he remained a tireless supporter of patients and families navigating the same struggle.
From 2018 to 2020, Pinheiro served on the founding board of Cure VCP Disease, helping to shape the organization’s early mission and outreach. Even after stepping down, he remained active in raising awareness and connecting with others in the community. Many remember him from patient conferences in St. Louis (2022) and Las Vegas (2023), where he traveled with his family despite severe mobility limitations.
His personal story was marked by resilience. VCP disease had deeply affected several members of his family over generations, but Pinheiro never lost his sense of hope. He often shared his journey publicly to inspire others, emphasizing perseverance and the importance of community support.
He is survived by his wife Marilda, daughter Ana, her partner Brenno, and nephew Fernando. Friends and advocates remember Eduardo not only for his leadership but also for his kindness and dedication to improving the lives of others living with VCP disease.
Leave a Reply