The Quiet Pioneer
A Tribute to John Walsh
I met John Walsh almost 18 years ago at the start of my journey to save my brother Stephen, who had just been diagnosed with ALS. I was seeking leaders who shared my ambition to accelerate treatments radically and in inventive ways. John stood out.
John knew he was destined to succumb to a genetic disorder, Alpha-1 Antitrypsin Deficiency (Alpha-1), which would lead to loss of lung function. Alpha-1 is not a fast-debilitating condition like ALS or some cancers, so John had time — time to fight right. He watched those of us who had a deep sense of urgency and virtually no time try to attack our problems, often frenetically. He was thoughtful and deliberate when he talked to us, but behind that calm demeanor was an incredibly ambitious plan to change everything about how lung disease was researched, and how patients were treated.
And change everything he did. In the pantheon of people who have profoundly impacted the way patients and the research system interact, John stands alone as someone who used his own tragedy to transform the lives of others. He founded the Alpha-1 Foundation and AlphaNet, and raised more than $65 million for research into the condition. Because he knew his work would be more widely applicable if he brought more lung-related conditions into the fold, he then founded the COPD Foundation. Today, COPD afflicts an estimated 30 million Americans. Half of them don’t know they have the condition. While I guess almost none of them know who he is, they will all benefit from John’s work.
There is a short list of people uniquely able to make a real, lasting difference. They have a fierce intelligence and ability to engage in the details, a deep understanding of the structural reasons that things are not moving forward, a relentless ability to work, and the leadership to sustain the necessary resources. I have seen this very rare set of skills in a few others, including Robert Beall, the former President and CEO at Cystic Fibrosis Foundation, Kathy Giusti, the founder of the Multiple Myeloma Research Foundation and Sharon Terry from the Genetic Alliance. These individuals and their institutions take on disease at the structural level in transformative and innovative ways. But John was the best of the best. While we sometimes tilted at windmills, railed, and got attention, he focused on quietly solving things. He put people and resources together and got things done, without any drama.
Anyone who gets seriously involved in advocacy or research understands that there really is no selflessness. We are applauded and rewarded emotionally for trying to do the impossible. To succeed you have to constantly question your own contributions and guard against the reality that good intentions are not enough. What you do must actually work and make a difference. Amongst all of us, John was the most all action, and the world was a better place with him in it.