The ALS Phenomenon

SPOILER ALERT: this is not a deeply personal blog post yet one that I felt should be written.

The blocked punt that inspired New Orleans to come back from Katrina. On September 25, 2006, playing in front of a Monday Night Football television audience for the first time in their home stadium in nearly two years, Steve Gleason stuffs Atlanta Falcon Michael Koenen's punt to lead to a touchdown. Just over four years later, newly-married and expecting his first child, Gleason learned he had ALS.

In September of 2019, we received news that would change our lives at a deep level, bringing us into close contact with new forms of suffering, the unconscious role time plays in our lives, and the possibility for redemption in the face of great trial. It has been a period of contemplation and a time to consider the many who have traveled this road before us, as well as those who will find themselves on this unchosen road in the future. We have come to believe that if there is no hope, there is no meaning to all of this. We can write ourselves into an exciting drama or we can be dispirited, contemplating the nothingness from which our lonely planet is said to have emerged and to which it will therefore return. In this vein, Deb has plunged herself into the writings of Tim Keller and N.T. Wright, while I have reread C.S. Lewis and kept an eye trained on how others have taken steps to build a permanent and redemptive relationship with ALS that will make us kindred with thousands we will never directly meet.

Shortly after receiving Deb’s diagnosis of ALS, our care was shifted from the MGH Department of Neurology to the Healey Center at MGH, a multi-disciplinary clinic devoted to the unique needs and progression of ALS. In doing so, we also entered a world of philanthrocapitalism that has been emergent over the past several decades, led by determined and foresighted individuals who were thrust into the ALS family. Each felt a call to take up arms in the struggle to tackle this neuromuscular disease that afflicts a relatively small number of people each year in a profound way. As I have written before, it places the mind and body in new relief, setting the spirit free in a powerful way. I want to mention some of the people we have learned about on this journey.

First, of course, there is Sean Healey. Sean, upon learning of his own diagnosis worked with his company, Affiliated Managers Group, to provide the core funding to build the Healey Center: $40 million to stand up and support MGH’s clinic where we have been treated for over two years. This was not the first such ALS initiative, however. Bob Packard, a gifted and much-revered investment banker with Alex. Brown, diagnosed with ALS in 1999, worked with colleagues to raise $4 million that eventually became the Robert Packard Center at Johns Hopkins for ALS research. And, most recently, Dan and Diane Riccio, based on Dan’s fortune gained from a lifetime in leadership roles at Apple, donated $15 million to the University of Massachusetts Chan Medical School, one of the global leaders in ALS research. These gifts, enabled by private sector successes coupled with motivated generosity, are examples of wealth repurposed. But they are not the only form of support that the ALS movement has seen.

Waiting last Spring at the Healey Center for one of the dozen blood draws accompanying Deb's Tregs study coordinated with Dr. James Berry and his team. We continued to drive each month to Boston to maintain our care with the MGH team, seeing them less only after our return home to Maine in October.

In 2011, Steve Gleason, a tenacious special teams player for the New Orleans Saints who made history blocking a punt against the Atlanta Falcons in the first home game from the Superdome post-Katrina, learned that he had ALS. His celebrity and drive, rather than personal wealth, led to the creation of Team Gleason, a non-profit that supports the provision of assistive devices for ALS patients. To date, they have raised more than $20 million. A year later, a former Boston College baseball player named Pete Frates learned that he had ALS. Two years later, in 2014, he initiated the Ice Bucket Challenge that became a worldwide phenomenon that would go on to raise more than $200 million for ALS. These athletes, in the long shadow of Lou Gehrig who was memorialized by Major League Baseball when they set aside a day in his honor beginning in 2021, joined the family of ALS, both ordinary and celebrity, who contend with this adversary each day.

Fame and wealth are not the only two means to push back against ALS. I have drawn tremendous inspiration from Ron Hoffman, founder of Compassionate Care ALS. Having cared for Gordon Heald, a Cape Cod resident who received a diagnosis in 1997, Ron and supporters began CCALS with an appeal for donations at Gordon’s funeral. Today, CCALS is a national leader in supporting ALS patients and their caregivers with a mind-bogglingly creative and multi-disciplined team that provides emotional and practical support for this disease that moves uninvited into so many lives. And ALS Therapy Development Institute, created by James Heywood upon learning of his brother Stephen’s ALS diagnosis, has grown from a basement operation in 1999 to become the most prominent, standalone non-profit dedicated to ALS research. James went on to create Patients Like Me, a website and social media platform that brings together patients with a range of medical conditions to share data and life experiences. Several years later, two Brown University students founded Amylyx Pharmaceuticals with a focus on developing therapies for neuromuscular diseases like ALS.

Deb with her father at an ALS TDI event in the Winter of 2020, just weeks before the world exploded with COVID, making us wonder in hindsight whether we were too lucky by half, having spent the afternoon in Kendall Square with a few hundred people sampling chili and beer.

There was a movie with the title “Pay It Forward” that came out in 2000, where a boy attempts to make the world a better place, paying it forward. It is a subject that can seem distant and immaterial, but it contains great power. And it has had us thinking for the past two years about ways to bring beauty from sadness, hope from suffering. A few months ago, with the support of friends, we took steps to begin such an enduring means to lean into ALS for those whom we will never meet but with whom we will have an eternal connection. Working with an experienced community foundation to remove the need for us to establish a separate non-profit, we are building a place to direct our resources and those who feel so moved to join us. It will be a source of funding to focus on therapies and care, each requiring unique and different support.

Deb and I believe that the Judeo-Christian idea that we are made in the image of God makes us uniquely capable and responsible to be creators or co-creators of a Kingdom here and now that changes the arc of history in miraculous and often inexplicable ways. And the inspiration of business tycoons, athletes, and people who look a lot like us helps us to point our faith into the challenge. These examples can be ascribed merely to vanity or fame, but such explanations do not nourish or fully recognize and redeem the actions by so many. Nor could we take great comfort from an indifferent natural world as we are awake at crazy hours pushing into this disease together if we felt that nothing ever done or to be done will make any cosmic difference. In 1977, I spoke to our senior high school class, not realizing I was paraphrasing a text from Isaiah that we are to respond to God’s admonition to “Go!”, until two elderly women approached me afterward in the hall outside the auditorium. I never forgot their kind faces or their wisdom born of years and faith. That night I sarcastically prophesied in my prepared remarks that our generation could do better than fight to legalize marijuana, hardly knowing what lay ahead as a seventeen year old, both for marijuana and for my life.

I hope you find this history of the ALS movement to be inspiring. Without efforts like these, so much suffering would be so much worse and seemingly pointless. The opportunity to reach beyond ourselves, our families, and our material needs provides a platform for eternal hope and the expression of gratitude to those who also made sacrifices that now support us. Last Friday, I sat with a friend from Boston whom we last met in the same Yarmouth brewpub two summers ago when Deb was still able to walk and speak. She twisted my arm into taking the three of us on a spur-of-the-moment boat ride out on Casco Bay, idling and reminiscing off the coast of Chebeague Island as we looked up at our old home at the top of Wharf Road. As we were finishing our lunch on Friday, my head was spinning with new fundraising ideas as I listed schemes with Jack, based on his decades-long association with Swim Across America. What about golf tournaments, bicycle rides, anything? Maybe an annual ski race focused on ALS. There are so many ways to give our time, talents, and treasures; we only need curiosity, a will to action, and people itching to engage so that someday we might eliminate ALS or lessen its hold on those visited by it.

NOTE: for those of you wondering just how things are going here, we will write soon with greater details. The year started off with some unexpected twists in the ALS progression, taking us deeper into the unexplored places where this disease relentlessly leads.

If you might indulge me, it would be great to hear from you. Write a comment here on the website, privately or as a response to this post. I promise that Deb reads them all and revels in your words, thoughts, and prayers. As we have become more sedentary, we crave the outside-in contact.