In this special episode, Bonnie Schneider, co-founder of the IgA Nephropathy Foundation, shares her journey and reflects on 20 years of service to families affected by this rare disease.
When her son Eddie was diagnosed with IgA Nephropathy (IgAN) at age 13, Bonnie and her husband felt lost and isolated. This profound experience motivated them to create a foundation that would ensure no family felt alone in their battle against IgAN. Today, the Foundation has become a beacon of support, advocacy, and hope for patients around the world.
Bonnie speaks to the Foundation’s mission to support and empower patients with information and to push for better and more targeted treatments and, ultimately, a cure. She highlights key milestones, including the launch of our annual SPARK meeting, reflecting on the emotional power of these gatherings: “Seeing the tears of joy, hugs, and the exchange of contact information… that’s really, really powerful.”
Over the years and like any new endeavor, the Foundation has faced challenges, but perseverance and faith have been Bonnie’s guiding principles. She recalls moments of doubt and credits her unwavering commitment to the cause and the support of her team for pushing through. “I made a deal… you just leave me the breadcrumbs and make sure I’m heading in the right direction.” Her advice for anyone facing obstacles is simple: “Don’t give up, just keep persevering.”
Bonnie’s vision for the future is global, as the foundation is working to expand its reach and make sure no patient, regardless of location, feels alone. As she proudly states, “We want to be that life-saving community.” Through new therapies, clinical trials, and a growing IgAN community, the Foundation continues to push for progress, always keeping the patient voice at the heart of their efforts.
Episode 19: Leaning In – A Journey of Love, Resilience and Care