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  • Writer's pictureD. Maurice Kreis

Outrageous and Demanding: My Pantheon of Cystic Fibrosis Heroes

Updated: Dec 24, 2020

Christmas Eve offers a great excuse to do something I've been meaning to accomplish for quite a while: write down my pantheon of heroes from the world of cystic fibrosis.

Why do something like that? Mainly it's because I like having heroes -- people whose example I can consciously follow when my relatively dull brain doesn't otherwise come up with the relevant insights. I've discovered that a great way to live is to ask myself, frequently: WWWWD -- or, what would Warren Warwick do? (If that makes you wonder who the heck Warren Warren Warwick was, please read on.)

Of the 16 names on my list, I've met, or at least spoken with, 11 of them. (I put their names in boldface type.) A few are famous in mainstream culture, several are acknowledged luminaries at a national or planetary scale, and others are just remarkable people who have helped my family and other families like ours.

Oh, one more thing. You will notice that my daughter isn't on the list. That's because she's not my hero -- she's my meta-hero. If I put her on the list it would not be fair to the others; they're the stars in the sky but she is the universe itself.

So here's the pantheon, listed not in any order of importance but, rather, alphabetically by last name.

Dorothy Hansine Andersen -- Alphabetical order aside, she'd have to be first in any event because it was Andersen who discovered and named cystic fibrosis in 1938. She wanted to be a surgeon but because she was a woman and gender discrimination was rampant, she settled for pathology. Every person since 1938 who did not die in early childhood from CF owes her longevity to Anderson and she is well past due for her "overlooked no more" New York Times obituary.

Bob Beall -- This biochemist joined the CF Foundation as director of science and medicine in 1980 and eventually became president and CEO, leading the CFF as the organization invented "venture philanthropy" and truly started to tame the disease. Though Beall was friendly and affable when he met me and my daughter, in a way he's kinda scary; it's obvious he's the kind of intense and gifted leader you'd want to put in charge of your big project, but you wouldn't necessarily want to work for him unless you were prepared to throw every ounce of your being into the effort.

Bill Boyle -- This affable and grandfatherly Dartmouth Hitchcock pediatrician (now retired) single-handedly brought patient-centered, patient-empowering care to his institution and he is a revered figure in the Hanover community. We know him as my daughter's first CF doctor; in that first year or two, we were frantic and freaked out while Bill was steady, encouraging, and non-judgmental. Aside: By coincidence, Bill's son Tim Boyle is now my wife's boss. What a world!

Alicia Casey -- This Boston Children's Hospital pulmonologist is currently my daughter's CF doc, and boy was she ever the right physician at the right time. Boston Children's is one of the institutions that pioneered CF care, so of course you'd expect their CF doctors to be world-class clinician-scientists, as Alicia so obviously is. She also knows exactly when to humor my daughter's excesses and when to be the admonishing voice of reason. And, let's just say that incoming President Biden could do a lot worse than appointing Alicia Casey to some highly sensitive diplomatic post that would routinely find her in rooms full of people who weren't necessarily getting along with each other.

Francis Collins -- You know him as the director of the National Institutes of Health and as the public figure who probably has done more than anyone else to explain how to reconcile faith in God with a relentless commitment to science and empirical truth. Plus he's Anthony Fauci's boss and he can play the guitar. We know him as the scientist who, 31 years ago, led the U.S. team that played a key role in discovering the gene (on Chromosome 7) whose mutation is the cause of cystic fibrosis. Here's the song about it that I saw him perform in Nashville on November 1, 2019. If that doesn't get you his interview that same day with Mary Louise Kelly of NPR will.

Jonathan Dailey -- Sometimes people thank me for making sure that cystic fibrosis got added to New Hampshire's newborn screening program, a change that abated the failure-to-thrive suffering of undiagnosed CF babies in the Granite State. But it was really Jonathan, then an adult CF person from Nashua, New Hampshire who shared his "rectal prolapse" story with the Legislature, a snippet of his suffering during his five years, as a child, with undiagnosed CF. Trust me when I tell you that if you have ever experienced rectal prolapse it is ordinarily not a story you would want to tell the world in detail. But Jonathan did that, in unpretentious fashion, which is how he did everything. Alas, CF people whose diagnosis was delayed (pre-newborn screening) tend to die young and it has now been more than a decade since he passed away. But he has not been forgotten!

Frank Deford -- The sportswriter and public radio commentator from Connecticut who literally wrote the book about life as a Gold Star CF dad. How I wish I'd had the pleasure of meeting him before he passed away; I was a fan long before I'd even heard of CF. Like more than a few CF parents who suffered similarly heartbreaking losses, Deford did not walk away when eight-year-old Alex Defored died. He did the opposite, serving for 17 years as the chair of the CFF Board of Trustees.

Mary Dwight -- As chief of policy and advocacy for the Cystic Fibrosis Foundation, Senior Vice President Mary Dwight seems to pull off naturally that which I could never even pretend to do. She stalwartly defends the Affordable Care Act, because she knows it is absolutely essential to the wellbeing of People with CF, but does so while managing to keep the CFF out of partisan politics. It sure looks to me like every single matter that crosses her desk requires a similar degree of judgment and care, from drug pricing to crisis standards of care (i.e., rules for triage if hospital capacity runs short) to figuring out who gets a star turn at the CFF advocacy events she organizes. I badger Mary to do the right thing all the time; she responds in friendly and kind fashion -- and, guess what? The "right thing" is pretty much always what she says it is.

Lynn Feenan -- It does not take long for the parent of a child with serious health challenges to figure out who really delivers the care in medical facilities. It's the nurses. As the nurse-coordinator of the pediatric CF program at Dartmouth Hitchcock Medical Center, Lynn is not just the nucleus of the cell; she's also the mitochondrion, the golgi bodies, and everything else that makes the complex system of CF care work for her patients. (As an English major, I love to throw around microbiology terms I picked up by learning about CF.) She has been there for my daughter again and again and again, and she has helped me through times of sorrow, anger, confusion, and cluelessness. Her contributions are so consequential and wide-ranging that she really ought to appear several times on this list of heroes.

Jay Gironimi -- In the Venn Diagram that shows people with CF and people who are heavy metal musicians, the two circles do indeed overlap. That's the Jay Gironimi zone, but to me he'll always be a big deal because he wrote the fabulous CF memoir "Can't Eat, Can't Breathe." Gironomi refuses to romanticize life with CF and he has the nerve to point out that people who broadcast their heartwarming stories of their successful struggles with the disease should not be allowed to omit the details of who's paying for their ultra-expensive healthcare.

Brian O'Sullivan -- Yes, Brian is an awesome pediatric pulmonologist, yes, he wears bow ties (and thus is the best-dressed person on the list) and, yes, he is one of the fabulous doctors who has helped keep my daughter healthy over the years. What I love about Brian, though, is that he is not afraid to shake his fist at the pharmaceutical company most people in the CF community revere (Vertex Pharmaceuticals) because he knows they're charging too damn much for the miraculous modulator medications Vertex developed (with the financial help of CF families who donated and fundraised for the CF Foundation, which then venture-philanthropy'd Vertex on to glory).

Rosemary Quigley -- Though she lived only to the age of 33, Rosemary Quigley was determined to leave a mark. So she went to college, then law school, and then on to a federal clerkship in Maine (working at the Gignoux Courthouse in Portland, just a few years after I passed through) and then onto a career as a medical ethicist. Here's the Rosemary Quigley quote that should be chiseled into the entablature of the CF Foundation headquarters: "Disease has given me license to be outrageous and demanding; those who don't have the context for these characteristics cannot grasp me. I am discouraged by people who confer admiration on my most basic accomplishments; I seek supporters who never think I have done too much, who will push me further for as long as possible. I focus my spirit to outlast my withering body. Illness trumps the freedom to pick one's fights."

Paul Quinton -- "Eureka!" Paul Quinton actually said that, and not ironically, when he made a breakthrough discovery as a professor of pulmonology doing research on curing the medical condition with which he has now managed to survive into his eighth decade. It's cool to have met someone who legitimately got to say "eureka" but the truly remarkable thing about Paul is that he follows his conscience. In other words, like his friend Brian O'Sullivan he's not afraid to criticize Vertex, or even the CF Foundation, both of which owe their successes in part to him and both of which he fears have become too wealthy for their own good.

Dennis Stokes -- What a remarkable thing it was to watch this pulmonologist take care of my daughter after Bill Boyle retired. He's low key, even a bit old-school, but slowly but surely one realizes that everything Dennis does or says exudes wisdom, insight, and compassion. Not only does he have impeccable clinical judgment but he is a person of integrity and people-smarts. Looking back, it makes perfect sense that Dennis is the person who introduced me to the first of Dr. Joseph Simone's Maxims, which is: Institutions do not love you back. (Dr. Simone was writing about academic medical institutions but his wisdom is readily transferable to other contexts.) If you think Simone's First Maxim sounds cynical and hardbitten, you're wrong, as Dennis clearly understands. If you grasp that institutions don't love you back then you soon realize that people within institutions can and do lavish lovingkindness upon one another, all the time.

Lap-Chee Tsui -- Oh Canada! Tsui is the one; he and his team discovered the CF gene in 1989, in his lab at the Hospital for Sick Children in Toronto. Tsui and his colleagues reached out to Francis Collins and his team at the University of Michigan and, get this: They cooperated! The breakthrough is typically credited to both groups, and I have no reason to argue with that. I just have a feeling that Tsui and his colleagues in Ontario deserve more credit than they generally receive.

Warren Warwick -- He invented the physical therapy machine my daughter uses ("The Vest"). In 1966 he started the CFF's national patient data registry -- which is, at least as much as venture philanthropy, the secret sauce of the Foundation's phenomenal success. And when surgeon/journalist Atul Gawande wrote an article in the New Yorker in 2004 that featured this great pediatric pulmonologist (who made the CF Center at the University of Minnesota an astonishing success) Gawande identified "focus, aggressiveness, and inventiveness" as Warwick's essential qualities. What's cool about that? You don't have to have a PhD or an MD or even a checkbook to cultivate those qualities in service of the quest to overcome CF. Dennis Stokes introduced me to Dr. Warwick at a CF conference in Baltimore; I felt the way Beatles fans must have felt in 1964 if they happened to have chance to greet John Lennon. WWWWD? I think I need a lapel pin, or a t-shirt, with those letters on it.

Meanwhile, if you're anywhere near as inspired by these people as I am, maybe you'd like to pay tribute to their good work. Here is how to do that.

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