Paul Cellucci’s death is painful not just because it marks the end of a life that was celebrated and cherished by so many, but also because it marks another end of the life of a friend with amyotrophic lateral sclerosis (ALS – also known as Lou Gehrig’s disease), the disease I likewise live (and struggle with) on a daily basis. Incurable and essentially untreatable, ALS is a seemingly hopeless condition that impacts millions of patients and their families every year.
As a nonprofit focused on fostering breakthroughs in ALS treatments, my organization had the good fortune to work with Paul Cellucci throughout the past several years, including his participation and support for our events and work. As with his political career, which was defined by fairness and non-partisanship, Paul Cellucci rallied behind both the UMass Champions Fund for ALS and other ALS organizations like ours. It wasn’t about an alliance with one group over another — it was about doing what was right for the people who stand to benefit from the hard work that ALS organizations do each day.
It was also about hope — which is not always an easy thing to keep in mind when faced with ALS. There are many reasons not to be hopeful: ALS is a rapidly terminal disease for which treatments are almost nonexistent, and as a result, it has been “orphaned” for many years. Without promising paths to a cure, many physicians may choose other disease specialties; many scientists may choose more well-known problems. Many people don’t know much about ALS, except when they hear sad news about the deaths of prominent ALS patients.
But there are also many reasons to be hopeful: In the past two years, we have seen cracks in the apparently impenetrable walls of ALS, which has defied medicine’s best efforts since the disease was first identified in 1869. A recently identified genetic cause of the disease has infused the research and development landscape with new determination; programs like our prizes for innovations in ALS research s have fostered small but significant breakthroughs in the search for a cure
For example, Harvard scientist Seward Rutkove, who was awarded the $1 Million ALS Biomarker Prize4Life in early 2011, has developed a device that is now in clinical trials to help develop treatments for several neuromuscular diseases. The 2012 DREAM-Phil Bowen ALS Prediction Prize4Life has led to the generation of new approaches to better understand and predict the future course of a patient’s disease, approaches which are currently being explored by industry in its efforts to design more effective ALS clinical trials.
Those in the science world know that change is often very slow, and breakthroughs are few and far between. Similarly, political change can be slow and often frustrating for those waiting to see the effects of change. Paul Cellucci worked tirelessly to foster the kind of change that he believed in, and that he believed was best for his constituents. Similarly, ALS researchers and the organizations that surround them continue the work to which we have committed, even if the light at the end of the tunnel often seems unimaginably far away.
But hope is not an abstract concept to me. It is the lifeblood of my work with Prize4Life and the tie that connects all of us affected by ALS — from patients facing unimaginable choices about their care to those who held Governor Cellucci in such high esteem regardless, or perhaps because of his diagnosis. Hope is the light in our tunnel and it is growing. However small, that light shines bright as an inspiration, just as the life of Paul Cellucci continues to inspire us all.
Avi Kremer is chief executive officer and co-founder of Prize4Life.