A few years after my brothers first transplant, our family received news that made us feel less isolated. In the early 2000s, several news outlets ran articles profiling NBA Hall of Famer Alonzo Mourning’s struggle with FSGS. While we were saddened to learn that Mourning was also struggling with this difficult diagnosis, it was inspiring to finally see a light being shed on the disease. The news articles – detailing the disease and quoting nephrology experts – gave us new insights.
Shortly after the article came out, we learned that a newly established advocacy group, NephCure Kidney International, was helping to improve education, elevate awareness, raise funds and drive research for FSGS.
Mourning’s powerful story and the inception of NephCure Kidney International made my brothers and I want to do something – we felt empowered to make things better. We decided to hold our own local educational event in the Chicagoland area, in addition to hosting an annual walk for FSGS. We raised money for NephCure Kidney International, but perhaps more importantly, we got to meet many others living with the disease and hear their stories. It’s not an easy journey. In my brother’s case – and what we learned was also the experience of many others living with FSGS – the disease came back after his kidney transplant and additional kidney transplants were needed. This is a devasting experience to discuss, but it was very helpful to hear from others going through it, and to know that we were being listened to and research was happening.
This experience made a big impact on my life. It led me down a path to being part of the patient advocacy and communications team at Horizon. Our approach is to listen, learn and understand the challenges of the rare disease community. We have learned over the years that the most impactful programs and initiatives are born out of the true experience of those living with the disease and their families. We take the lead from these advocates – from large non-profits to small groups of volunteers working nights and weekends – and we share these insights back into our organization and throughout the rare disease community. It is a privilege to be part of a company that puts this deep a focus on patient engagement, and being able to work with brilliant scientists that want to hear the patient experience to inform their efforts driving rare disease research.