Ada DeBold: How One Mother’s Love Saved Thousands of Lives

It takes immense passion to crusade for social change but even then, it is no match for the zeal of mother on a mission to save her son. That’s exactly how Ada DeBold’s motherly love started a movement that gave birth to the National Kidney Foundation. 

 

Ada's crusade began in 1950 when her son, Bobby, was stricken with nephrotic syndrome, then called nephrosis – an almost certainly fatal disease that afflicted young children. Yet, there was no effort to stop it or even understand it. By the power of grit, propelled by the ultimate dream to save Bobby, Ada convened a small group of influential doctors and families whose children were suffering from the same disease and started The National Nephrosis Foundation. The organization’s goal was to raise funds to study nephrosis and ultimately, find a cure.

 

In the era before technology, the Internet or social media, when a woman’s only place was at home, Ada relied on her resourcefulness, ingenuity and old-fashioned legwork to find other nephrosis patients. She reached out to local hospitals to track down other parents of children suffering from nephrosis, spent long hours in the library learning what she could about the disease, and held meetings in her own living room in Tuckahoe, NY, to facilitate information-sharing between doctors and the families.

 

Funding those efforts proved to be nearly as challenging as finding the patients. Ada’s cause wasn’t known and her network was limited. But she was a mother on a mission, single-minded in her quest to save her child. She solicited funds by mail, painstakingly handwriting letters. Her husband Harry and son Paul licked hundreds of stamps or delivered to the post office. Such soliciting was illegal, but fortunately, police felt sympathetic to the poor mother with a child swollen beyond recognition and turned a blind eye.  

 

Thanks to Ada’s early intervention and her incredible determination, Bobby participated in an experimental drug trial that eventually led to the discovery of a successful nephrosis treatment. While it was too late for Bobby – he lost the fight at only four years old – Ada’s efforts did not turn futile. The drug went on to save thousands of young lives. The National Nephrosis Foundation became the National Kidney Foundation (NKF) which started a national movement against kidney disease.

 

Today, our story continues. Rooted in Ada’s DeBold’s activism, NKF is revolutionizing the fight to save lives by eliminating preventable kidney disease, accelerating innovation for the dignity of the patient experience, and dismantling structural inequities in kidney care, dialysis, and transplantation. Together we can create a more equitable future–one where there is KIDNEY EQUITY FOR ALL™.