John W. Walsh, whose vision of a research foundation and a patient services organization for people with Alpha–1 Antitrypsin Deficiency led to today’s highly successful and influential Alpha–1 Foundation and AlphaNet, passed away surrounded by his loving family on Tuesday, March 7.
Condolences may be sent to:
c/o Alpha-1 Foundation
3300 Ponce de Leon Boulevard
Coral Gables, FL 33134
Walsh led the Foundation as president and CEO for more than 20 years, and under his leadership the organization became internationally recognized for its commitment to people affected by Alpha–1 and driving for the cure by investing over $65 million in research and programs worldwide.
Walsh was injured in a fall on an icy street in Washington, DC, in January 2016 and has not been playing an active role in the Foundation’s management. At its February 2017 meeting, the Board of Directors named him a Director Emeritus of the Board.
“With his incredible vision and tireless work ethic, John created a truly remarkable organization dedicated to curing Alpha–1 and caring for those affected by Alpha–1,” said Foundation Board Chair Gordon Cadwgan.
“I first met John in the mid–1990s at a national conference when the Alpha–1 Foundation was just an idea in his head. I saw the value of such an organization but thought the barriers were insurmountable. When I was invited to join the Board in 2004, I marveled at how far John had brought the Foundation. It had a dedicated professional staff, was well funded, was investing large sums of money in research and was recognized by its researchers, academia, government, industry and other rare disease organizations as a world leader. That was more than 10 years ago and the Foundation has gotten bigger and better since then. All of us owe John so much. We will miss him terribly!” Cadwgan added.
“John W. Walsh was one of the first Alphas I met when I was diagnosed in 1997,” said Henry R. Moehring the Foundation’s current president and CEO and Walsh’s successor. “John’s passion for and commitment to finding the cure for Alpha–1 was evident then and has remained steadfast ever since I have known him. John touched the lives of so many with his vision and drive to build the Foundation and AlphaNet. He worked tirelessly to develop better detection methods, to advance awareness with healthcare professionals, to advocate for our community, and to make sure that the brightest minds were working on the cure and had the resources they needed for success. He was my friend and I miss him greatly.”
Ab Rees, a member of the boards of the Foundation, AlphaNet and The Alpha–1 Project as well as a former chair of both the Foundation and AlphaNet, summed up his feelings:
“John has been our leader, our friend, our champion and our guiding light, striving for the cure for Alphas all over the world forever. We will achieve his vision for him. He leaves a big hole in our hearts.”
Marcia F. Ritchie, the Foundation’s executive vice president and chief operating officer, paid this tribute: “John Walsh, at great personal sacrifice to himself and his family, forged a path to make life better for others. He found it unacceptable that one of the most basic functions of life, breathing, was difficult for so many. He became the champion who would lead the charge to increase detection and research and to advocate for access to specialized healthcare and therapies for a little known disorder named Alpha–1 Antitrypsin Deficiency.”
Marcia F. Ritchie
Added Ritchie: “John was a former Army Ranger. Though he was afraid of heights, he volunteered for Airborne School and became a paratrooper, because parachute jumping out of planes is a required skill for a Ranger. That should tell you a lot about the strength of his character, will and commitment to mission. I count myself as one of the lucky ones who were drawn into his orbit. I will miss him very much.”
Walsh believed that his idea of the Foundation/AlphaNet business model was crucial because it brought both outstanding services to the Alpha–1 community and recurring revenue for the Foundation. This year, Foundation leaders expressed their gratitude for a milestone $50 million in total contributions from AlphaNet, the not-for-profit health management organization for Alphas that has long been a pillar of Foundation support.
Robert A. Sandhaus, MD, PhD, clinical director of the Foundation and medical director of AlphaNet, recalled the early days with Walsh. “I first met John while we both served on the Board of the Alpha–1 Association in the early 1990s. John was an unstoppable force of nature, a font of ideas backed by his unwavering belief that we could prevent the children and grandchildren of Alphas from future suffering.
Robert A. Sandhaus, MD, PhD
“John knew everyone and everyone knew him, whether in government, industry, or the patient community,” Sandhaus continued. “No matter the audience, he spoke with conviction, power, and emotion, always with the goal of moving forward in identifying all those with Alpha–1 and finding a cure. He traveled the world to move those goals forward, despite his health issues. Perhaps the greatest testament to his success is that the organizations he founded have been able to continue successfully without him.”
Walsh, Sandy Lindsey and Susan Stanley, all diagnosed with Alpha–1, co-founded both the Foundation and AlphaNet in 1995. Both the Foundation and AlphaNet received 501(c)(3) not-for-profit designations,
The new Foundation wasn’t quite a bootstrap operation – Bayer, the manufacturer and marketer of Prolastin, then the only Alpha–1 augmentation therapy, had donated some seed funding. But the Foundation couldn’t afford its own office, equipment or paid staff at the beginning. Walsh donated space and equipment in his own business office.
Walsh ran the Foundation’s business side. Lindsey, who’d had a long career with not-for-profits, built the Foundation’s governance structure. Stanley, a journalist, created Alphas Online, an email “listserv” intended to provide online connectivity to Alphas around the world. (Stanley passed away in 2000 and Lindsey in 2002.)
The Founders - Susan Stanley, left, Alexandra "Sandy" Lindsey and John W. Walsh
Terry Young became the first AlphaNet coordinator in the summer of 1995. As AlphaNet grew, he became its first general manager and remained in that post for many years. Young passed away in 2014.
Over the next two decades, Walsh built a worldwide reputation for the Foundation that was far greater than its size. Alphas, researchers and clinicians, and leaders of industry and government around the globe considered Walsh the central figure – the best-known and most influential leader – of the Alpha–1 community.
And then Walsh did the same thing in the huge patient population with chronic obstructive pulmonary disease (COPD). In 2004, he became a co-founder and the first president of the COPD Foundation.
In 2015 he said, “I’m thankful that the Alpha–1 Foundation is responsible for creating the COPD Foundation, because we’ve used the strategy of Alpha–1 in building the infrastructure for COPD research. The half-million dollars the Alpha–1 Foundation invested to launch the COPD Foundation was one of the best investments we’ve made.”
He pointed to the increase in Alphas being diagnosed in recent years, the ability to imbed the Alpha–1 message into COPD Foundation messaging, and the benefit of having more doctors thinking about “ruling out” Alpha–1 in their COPD patients.
The COPD Foundation honored Walsh with its Visionary Award at its 2016 Air Affair benefit. He was inducted into the COPD Hall of Fame in 2012, and was also a past chair of the International COPD Coalition.
As the Alpha–1 Foundation turned 20 years old in 2015, Walsh shared some thoughts on his mindset and strategies for building a successful research foundation for a rare disease community. Here are two of his answers from an interview with Alpha–1-To-One magazine:
What was different about the Foundation that made it so successful?
“The voluntary health sector is pretty regimented – how you operate, how you raise money, how you support programs, what kind of programs you do. We were completely maverick, because we did this with an entrepreneurial perspective. A lot of things we did were never done the way we did them, not because they weren’t right, but because they weren’t in that not-for-profit mentality. I think that’s the big thing. It was unheard of, what we were able to create with AlphaNet. The recurring revenue piece – nobody was doing that.”
What was he most proud of?
“One of the things I’m proudest of is that we have established immense credibility in the scientific, the clinical and the volunteer health sectors. That’s pretty tough to do. One of the things that people constantly come up and say to me is, ‘How do you attract all this talent?’ And I don’t think it’s magic, I think it’s just, we’re focused, we’re not going to waste (the researchers’) time and we respect their talent.”
In October 2016, Mark L. Brantly, MD, director of the Alpha–1 program at the University of Florida, Alpha–1 researcher and clinician for three decades and Walsh’s longtime friend, announced a $225,000 gift from himself and his wife Judy Lew, MD, to honor Walsh by establishing the John W. Walsh Translational Research Award. “I am personally interested in funding translational research, which aims to ‘translate’ findings in basic research into medical practice and meaningful health outcomes,” Brantly said.
The award is a part of the John W. Walsh Research Fund, a broader fund focused on research to find the cure for Alpha–1. “Donors can restrict their donations, as Mark and Judy have,” said Moehring, “or they can make an unrestricted gift that will be used toward the overall goals of the fund.” Donations can be made here.
Among Walsh’s many other honors:
In 2014, the National Organization of Rare Disorders presented him with a Lifetime Achievement Award in recognition of his continued dedication to the Alpha–1 and COPD communities.
He served as chair of the National Health Council board of directors (2005–2006).
His appointment as emeritus member of the American Thoracic Society (ATS) Public Advisory Roundtable stemmed from his involvement as former chair and member, serving as presidential appointee (2004–2005) of the ATS Board of Directors and trustee of the Foundation of the American Thoracic Society (2006–2008).
In 2002, he received the Food and Drug Administration Commissioner’s Special Citation for his “pioneering collaboration in orphan drug development.”
He was a former member of the National Institutes of Health Director’s Council of Public Representatives and Council of Councils, and a member of the National Institute of Diabetes and Digestive and Kidney Diseases Advisory Council.
He is survived by his wife, Diane; daughter, Linda; and granddaugher, Lily; and also by his twin brother, Fred; his sisters, Susan Ferro and her husband, Don, and Judy Walsh; as well as his nieces and nephews.
To continue to move John’s mission forward, the Walsh family requests that donations be made to the following funds: John W. Walsh Research Fund. To donate by phone, call 1–877–228–7321, ext 204 and the JW Walsh Fund to Cure COPD.
The Walsh Family will celebrate John’s life in a private ceremony. We welcome those who would like to celebrate John’s legacy to look to the calendars on alpha1.org and copdfoundation.org for memorial events in your community.
Many of Walsh’s longtime friends and colleagues contributed some of their thoughts and feelings on his passing.
"It wasn’t John’s good looks or intelligence that made him a leader (although he had both). It was his passion. John put his heart and soul into everything he touched. He always took the podium with a tear in his eye. He could not sit idle when bureaucracy was stealing critical time from his agenda to find a cure. And when he asked you to lead a project, there were few who could turn him down.
When asked what John has taught me, there is no doubt that my enduring answer will be to put passion into your work. With passion, everything is possible."
- Charlie Strange, MD, director of the Alpha–1 Foundation Research Registry and the Alpha–1 Coded Testing (ACT) Study.
"John was masterful at identifying a problem and finding an innovative and nimble solution. His solutions to increasing awareness, treatment, research and access to care have forever changed the landscape for Alpha–1 and all rare diseases. One classic example in the area of rare disease awareness: John linked the rare to the common with Alpha–1 as the most common known genetic risk factor for COPD."
- Miriam O’Day, for many years the Foundation’s senior director, public policy
"John had vision, was goal-oriented, and understood the scientific basis of Alpha–1 Antitrypsin Deficiency. He was a gifted businessman and charismatic Alpha–1-affected advocate who established solid partnerships with the rare disease community and relevant government agencies to promote the mission of the Alpha–1 Foundation and find a cure for Alphas. It was an honor to work with him and a privilege to call him a friend."
- Adam Wanner, MD, Foundation scientific director
"I was pulled into John’s magnetic field in 1994 while I was recovering from my lung transplant. We were chatting at an Alpha-1 Association Board meeting. I’d been feeling pretty good and mentioned that I was considering what might be next for me. John gave me a fierce look and said flatly: 'All Alphas who get transplants leave the Alpha-1 community.'
It was a clear challenge. He expected transplanted Alphas to stay in the family and continue the fight - me included.
He promoted Team Alpha-1 by making introductions and finding sponsorships, but in a personal way, too. He was fearless: leading the first Team Alpha-1 event, he went out in a pair of bike tights, on a bicycle for 10 miles along A1A on Florida's east coast. After that, John “took one for the team” every September, riding with Team Alpha-1 in the Escape to the Cape bike ride. The bike rides were tiny dots in the sphere of John’s global impact – but everything John did impacted people along the way. His Alpha-1 legacy is like a boulder rolling down a mountain - unstoppable until the mission is done.
John, we’re doin’ it!"
- Mary Pierce, who founded Team Alpha-1 with sponsorship by the Alpha-1 Foundation in 1995, the Foundation’s first year
"I had never worked for a boss as driven as John. In the 10 years I worked for this brilliant man, we developed the closest and warmest relationship that I'd ever had with any boss. It was definitely a challenge to keep him organized. He was an admirable man and I will always "keep the faith," as John always said, knowing his ultimate mission in life will be accomplished."
- Mayra Grandio, retired executive assistant for John W. Walsh
"I’ve known John since 1999, the year we planned and successfully introduced the original Prolastin Direct program. We decided that in the best interest of the patients, we must disrupt the then-existing distribution model to address the inefficiencies that led to unnecessary product shortages and price gouging. After many months of scenario planning, debating and training, the program was launched in late 1999. John’s role was that of tireless advocate for the patients, problem solver and comforter-in-chief to all parties while we ironed out the kinks. The program is still in use today, some 18 years later."
- Jean-Marc Quach, president and CEO, The Alpha–1 Project
"In 1996, when John Walsh found out I was a lawyer, he asked me to become a member of the Alpha-1 Foundation Board. He told me he expected the Board to promote and raise money for Alpha-1 research. I attended my first Foundation Board meeting in January 1997, and left the Board in 2007.
Under John’s leadership, the Foundation has morphed into an international research giant. For example, John proposed and the Board funded the first International Patients’ Congress. Likewise, under his leadership, the Board established national and international scientific conferences and a Medical and Scientific Advisory Committee with experts in Alpha-1.
I have never known or worked with such a dynamic and charismatic leader. There were times when those of us on the Board thought John’s dreams weren’t possible. Nearly always, however, John convinced us to let him try. The Alpha-1 Foundation today is the result. Many Alphas, including me, wouldn’t be here today if it weren’t for John. Thank you, John, from the bottom of my heart."
- Sarah E. (Sally) Everett
"John was one of the most extraordinary people I have ever known. Since becoming a member of the Alpha-1 Foundation Board at its second meeting more than 20 years ago, I have been incredibly impressed with John’s energy, his enthusiasm, his leadership and his vision. Few of us will ever have the kind of impact on others that John Walsh has had. He was truly one of a kind."
- Stew Cogan
"John Walsh has been an absolutely visionary leader in brokering the relationships between physicians, scientists, pharma and the NIH to advance the cause of curing Alpha–1 and enhancing the lives of those affected. He has left an indelible footprint on the field."
- James K. (Jamie) Stoller, MD, MS (Org. Dev.), Foundation Board member and longtime Alpha–1 researcher and clinician
"We were deeply saddened to hear of the passing of John Walsh, co-founder and CEO of the US Alpha-1 Foundation on Tuesday, March 7th. John was an inspirational leader for the Alpha-1 community not just in the USA but worldwide. A tireless advocate for Alpha-1 and the search for a cure, John’s enthusiasm was infectious and his warm personality opened many doors in the name of Alpha-1. He was very proud of his Irish roots and was a frequent visitor to Ireland. John was a tremendous support to the Alpha One Foundation in Ireland and a trusted friend. In October 2014 John was a special guest speaker at our Annual Alpha-1 Conference and everyone who heard him speak that day left with a spring in their step. He will be sorely missed by all of his friends here in Ireland. Condolences to his wife Diane, his daughter Linda and the rest of John’s family.
Ar dheis Dé go raibh a anam dílis."
- Alpha One Foundation of Ireland
Obituary in the Miami Herald
Obituary in The Washington Post
Obituary in The Boston Globe