EXCLUSIVE INTERVIEW: Empowering Voices: A Conversation with Bianca Ozcan on Spinal Muscular Atrophy

In a recent interview, Bianca Ozcan sheds light on the critical work being done by SMA Europe, a non-profit organization dedicated to supporting individuals and families affected by Spinal Muscular Atrophy (SMA) across Europe. Bianca had the privilege of attending the fourth Scientific Congress of SMA in Ghent, Belgium, alongside representatives from SMA South Africa and Ghana, highlighting the global reach and impact of SMA advocacy efforts.

SMA, short for Spinal Muscular Atrophy, is a rare genetic neuromuscular disorder characterized by the progressive degeneration of motor neurons in the spinal cord. With an incidence rate of approximately 1 in 6,000 to 10,000 live births, SMA leads to muscle weakness and atrophy, impacting essential daily activities such as breathing, eating, and movement.

During the congress, discussions and workshops focused on various aspects of SMA, including research, therapy, healthcare policies, and access to care. Bianca emphasizes the importance of elevating the voices of individuals living with SMA and their families, as patient advocates play a crucial role in advocating for patients’ rights and needs.

By empowering individuals affected by SMA and amplifying their voices, SMA Europe strives to collaborate with stakeholders globally to drive impactful initiatives aimed at improving the lives of those living with SMA. Through advocacy, influence, and strategic partnerships, the organization aims to create a comprehensive, multi-dimensional approach to addressing the challenges associated with SMA.

Bianca’s insights highlight the power of community engagement and collaboration in driving meaningful change for individuals and families impacted by rare diseases like SMA. As SMA Europe continues its mission to raise awareness, drive research, and improve access to care, the voices of patients and their advocates remain central to their efforts, ensuring that their needs and concerns are heard and addressed effectively.