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Remembering John W. Walsh

Published on Tuesday, March 7, 2017

John W. Walsh, whose relentless drive to cure Alpha-1 breathed life into the Alpha-1 Foundation and AlphaNet, is remembered

John W. Walsh, whose relentless drive to cure Alpha-1 breathed life into the Alpha-1 Foundation and AlphaNet, is remembered

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:
Walsh Family
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 Ritchie

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 Sandhaus

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.

John walsh

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?

John walsh

“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

 


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I was privileged to meet John in 1996 when the dream of finding a cure for Alpha-1 was just a spark in his and Diane’s eyes. He had just met his “angels” Barbara Weintraub and Ron and Karen Fraser. They raised the first substantial funds for the Foundation at a “Lunch with the Champions event (Marlins and Yankees) that drew more than 500 people and raised more than $150,000 for the tiny foundation. The event also spread tremendous awareness of the disorder in the Miami community. I then moved from my consulting role to become director of development for the Foundation and helped John build the foundation over the next seven years. Barbara, Ron and Karen were responsible for setting up the first Alpha-1 research professorship at the University of Florida with Dr. Mark Brantly as its head. As momentum grew, we would say the “stars came into alignment” for the Foundation with others joining the cause, such as Marilina and Leopoldo Fernandez and John O’Neil at the Health Foundation of South Florida, also with million dollar gifts. The rest is history. Everything that has been said in memoriam about John is true. He was a hell of a man. He truly made a difference in the Alpha-1 community and in the many other communities he touched and became involved with, such as COPD and many rare disorders. May he rest in peace knowing he did much good while on this earth.
Marlene Erven
He was a force of nature and a champion for the community and I will
fondly remember meeting with him and learning about the disease and the
struggles of patients and their families
Chris Adams
It is with profound sadness and a heavy heart that I write to extend my deepest condolences for the loss of your friend, colleague, and founder, John Walsh. Please know that at this difficult time, my thoughts are with you and all those whose lives have been improved by the amazing work of the Alpha-1 and COPD foundations.

John was a true example of boundless commitment and dedication to helping others. His immense charitable spirit and devotion to advocating on behalf of others gave a voice to the millions of Americans who suffer from Alpha-1 Antitrypsin Deficiency and Chronic Obstructive Pulmonary Disease. Although he is no longer with us, John will leave a powerful legacy and hope for finding the cure for those suffering from these terrible diseases. It is my sincerest desire that you take solace in the happy memories I am sure you have of John during this time of mourning and into the future.
Congresswoman Ileana Ros-Lehtinen, Florida
I am writing to you to convey my grief over the death of our leader, admired, and irreplaceable, Mr. John Walsh. Since I met him for the first time in Barcelona 14 years ago, we then met each other in various scientific events, and he has always given me affection, encouragement and support.
Ignacio Blanco, MD
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.
(May his soul be at the right hand of God.)

Alpha One Foundation - Ireland
John liked to call himself "an impatient patient", and he was. I once asked him what it would take for him to become "patient". As always; he was direct, "when they find a cure; I might let up a little".  But somehow I doubt he would. It was never enough to just help current COPD patients. He collaborated with researchers, and especially the National Heart, Lung, and Blood Institute, to increase COPD related research funding to help those diagnosed in future years.
 
John helped us find our voice and use that voice to call out our needs. I doubt he would ever let up on this endeavor. John's personality was such that he could energize a person, a room, and a community. He made us believe, because he believed, that we could make a difference if we make the commitment. He lead us, inspired us, and agitated for us to agitate for meaningful change. 
 
"If you're not at the table; you're on the menu". This is one of John's most often quoted statements. Currently we are trying to address the many challenges the COPD community faces because we weren't at the table for so many years past. Thanks to persons like John we are at many tables and are being heard. The COPD patient is more centric to health policy decision making than ever before. However, as our friend John would tell us, it is a good start, but only the start. We must keep this ball bouncing in spite of the fact that we suffered such a loss. I know of no better way to build on John's legacy, and keep his spirit alive. 
Sam Giordano - USCC Chairman
I remember first meeting John at Dr. Sandhaus's annual Alpha-1 picnic in Denver in 2005. After I was introduced to him as a newly diagnosed Alpha, he won me over with his twinkling eyes, laughing smile, and constant reference to the Alpha community as family ! I felt then and continue to feel today, that I had become part of group of people who would greatly enrich my life. Through John's leadership and the support of an amazing staff, a small group of people ,who have the same genetic condition have come together to support each other, hold one another up, and have a great time while doing it! I'll be forever grateful to John for showing us how to live happily and hopefully, while dealing with the limitations that Alpha-1 can present to us.
Thank you, John !
Judy Simon
John, dear brother, may you find peace on your final journey.
The whole Italian Alpha-1 community embraces you as one of our own. We have always received from you a sense of family, sharing and acceptance, from the time of our very first encounter in Rapallo. I clearly remember those moments - your kind smile, your lively and knowing gaze that instantly calmed the feeling of apprehension that a newcomer, so small and shy, faces upon entering the Alpha1 world.
Since our second meeting in Dublin with Larry Warren and Gordon Snider, we have shared a friendship that has overcome the barriers of language.
From then on, you have given all the strength and support that only a big brother, thoughtful and aware, full of patience, strength and ideas, can give.
Thank you for being a role-model, and for teaching us that from a little protein, a great family can arise.
Nuccia Gatta
I motioned him over to us, and said, "Hi John. I thought you might like to meet my daughter, Meghan." He approached with a large smile and one that seemed rather grandfatherly in nature.

"Well hello there Meghan. It so wonderful to finally meet you. I've heard a lot about you and your sister." He bent down to Meghan's level and cupped her face with his hand. She slumped down in her place a bit in shyness, but my heart melted. His love was powerful. John is a ravenous advocate for anyone with Alpha-1 Antitrypsin Deficiency, and here he was taking a moment to meet my baby girl, Megsy Rose. He struggles for breath from Alpha-1 daily, but there he was making Meghan feel special.

For me, it was a memorable moment. Meghan had no idea what it meant to me. She just knew another one of Mommy's Alpha-1 friends was there to greet her. I found myself wishing that Grace could have met John too. I've been in the world of Alpha-1 since 2002, when Grace was diagnosed. Alpha-1 is so much a part of my life now, and I can't imagine not having met such wonderful people, such as John.
Jen Childress
If I am recalling correctly, Jim and I met John at our first conference in Kansas City! He was so warm, welcoming and "down to earth" despite being an icon in the Alpha Community. He never thought of himself "more highly than he ought to think" (see Romans 12:3), was a tireless advocate for Alpha 1 and his sense of humor was contagious! Long before Jim and I attended the last conference that Jim was well enough to attend (San Francisco), John had become a friend. Both Jim and I would occasionally communicate with him via e-mail. I remember the day we sat with him at one of the events at a conference (how we laughed that day) and over the years have shared information, laughs, smiles and prayers for one another. I will miss him. My thoughts and prayers are with his family and our Alpha Community.
Carol Hosley
John was a humanitarian, a visionary, and a true leader. He gave us the encouragement that we could make an impact on this third leading cause of death. He backed his words with understanding, compassion, and action. When a public health perspective was needed in addressing community-based COPD efforts, he enthusiastically supported it. Now, we have a broader outreach and recognition within the public health community. Thank you, John!
Winston Liao
We were very sorry to hear of the passing of John. We have always admired John's work and dedication to the alpha community. His contribution was tremendous. On behalf of myself, David Tsur – Kamada’s Founder and past CEO, and the entire Kamada board and employees we would like to share our sincere condolences with Diane and the family, and the entire Alpha1 foundation.
Amir London - CEO of Kamada
Siento muchísimo la pérdida de mi admirado John al que pude conocer en Madrid. Mis condolencias a la familia.
Piedad Pisonero Ruiz
John's passion for both patients, caregivers, and providers left a huge impact on all of us. One of my favorite times was in 2010 in his office in Miami, when he shared his passion of the COPD and Alpha-1 communities. His vision and compassion was infectious, and impactful in a way, that I will forever be grateful for that afternoon hearing his heart and joy in the journey.
Bob Sobkowiak
I was so saddened to hear of his passing. John founded the Alpha-1 Foundation the same year I founded The LAM Foundation and we became great friends. He was an effective leader who cared deeply about the people he served. He was driven, passionate, compassionate, committed and loyal, inspiring everyone who got to know him. John never lost sight of his mission and he knew how to make things happen! I feel blessed to have known this remarkable man.
Sue Byrnes
John's loss leaves with me without words, but memories of him urge me to speak. I met John and Fred in 1993 I at the 2nd Alpha-1 Education Conference in Minnesota. They were the first Alphas my husband and I had met since my diagnosis 5 years earlier. Finally, someone who truly understood. In the years since, I have been privileged to share some of John's efforts to assist so many Alphas. One of my fondest memories was demonstrating self-infusion with John at the Orlando Annual Education Conference. He was an inspiration and a leader to everyone he touched. And will be greatly missed. Our prayers to his family.
Alice Dunkley
We first met John at one of the first Escape to the Cape bike treks. He was an instant influence on us and we quickly became friends. We will forever be in debt to John for the work he has done for the Alpha-1 community. Without John many us us would not be alive today. In talking with Fred this week I told him I feel like John saved my life with his commitment to the Alphas. It was our honor to ride with John on his last ride at the Cape. John had an electric bike while Barb and I were on our road bikes. John would always apologize to us as he passed us on the hills. We will never forget that ride and will always cherish John. Our deepest sympathy goes out to the entire Walsh family.
Don & Barb Davis
If it weren't for John Walsh I probably would never have known that ‘I Am One.’ It was his passion to raise awareness about Alpha-1 that made many people in the medical field pay attention. There are so many things that we have yet to know about what this disease can do to the body. I would like to mention that in 2009 when I was diagnosed, the doctor told me that this was a very rare disease and in fact I was only his second patient. The other patient he had just diagnosed in the same week. I told the doctor that I didn't think it was as rare as he said and that it seemed to me that they just didn't know much about it. In 2011 when I saw this doctor I asked him how many Alpha patients he had. He now had 55 patients and one just received a lung transplant. Thank You, Mr. Walsh. You are truly a Hero !!!
Debra Ann
John supported our work on antitrypsin deficiency for 25 years. We shared a vision of the 'cure' and he was to be the first patient I treated. Alas it is not to be. Goodbye dear friend - I will miss you.
David Lomas
I first met John shortly after the Alpha-1 Association began in the early 90’s. We were both newly appointed to the association board. From day one, John had a passion, a determination and mission like no other to find a cure for Alpha-1. John was a caring and compassionate man to everyone he met. I learned a great deal from John! A memory that will forever be etched in my mind is John saying, “Keep the Faith.” It always gave me comfort hearing those words from him. We must continue to follow John’s dream for finding a cure for alpha-1; I have no doubt that he will be with us, helping us along the way.
Julie Swanson
Dear John, thank you for being one of those key people in the world who contributes to changing peoples lives, encouraging them to believe they can make a difference and helping them grow to achieve such things.We are all carrying the gauntlet! Be at peace and rest dear friend.
Shane Fitch
“I'm sad today. A man who was genuine beyond belief and mentored me on many occasions has passed away. I have never met another human being like John, genuinely and I've met many. Rest in peace dear John, You were always the fastest credit card gunslinger I ever met and I never had the opportunity to beat you and pay for that lobster and fries. You will be sorely missed by all those people you advocated for. I am so glad my wife and children met him and shared great steaks. Guarantees we can always share a story that involved John.”
Nick Hartshorne-Evans
I will never forget the first time I met John in person at one of the conferences. It was Minnesota in 2011, I was sitting taking a break from walking from one meeting room to the next and I'm sure I must have been catching my breath. I remember as I seen him walk by thinking, there he is , I'm sure busy with a million things in his mind, preparing for his next meeting. I wish I had enough nerve to tell him thank you for everything he has done for all of us Alphas! All of a sudden he came toward me, sat down and asked me all about my story with alpha-1. I couldn't believe that as busy as he was that he took the time to come over and talk to me. I'm sure to others this may be no big deal, but it meant the world to me.
Jackie English
Great men may be recognized for doing great things. Really great men are seen in the way they treat ordinary people. All the while John was pursuing his goal of finding a cure for Alpha-1, he made every person he met feel as though they really counted. John was a man of amazing vision and capacity. Every Alpha is the beneficiary of John's labor.
David Saxon
I met John in 2004 as CFO of Centric Health Resources. I knew nothing about Alpha-1 even though I had 20+ years in healthcare finance and accounting. I quickly learned what a tireless advocate John was. He amazed me with his passion and hard work. My favorite memory of John is when my wife and I attended the Celebration of Life in Miami. John had spent the previous week on the move to various cities, prior to spending a full day at the COL. The next day happened to be my birthday, and John, Diane, Linda and his brother Fred all came out to dinner to celebrate. I knew he had to be tired from a tough week, and he insisted on being at the dinner. I will never forget how much fun we had - and how he made my birthday a special day. I am a better person for knowing John Walsh.
Larry Glascott
I first met John at the conference in Washington, DC in 2013. We met for the first time on the elevator at the conference. I had just been diagnosed a ZZ at the end of 2012 and I felt like the odd person out at such a huge function. I told him my story, and how confused I was and how I thought it was "game over". John reassured me, and helped me to better understand that I was NOT alone in this. I have since been our local support group leader of the O2 Seekers for 3 years here in Bakersfield, CA to also help other newly diagnosed, the best I can, to also know we are here to help better understand, as John did for me that day on the elevator. What an inspiration he was to many. John was so loved by so many. I may not have been as close as others, but, he made a difference in my life.
Dee Dee Towle
I have only worked with John for a very short time, but in those 4 months and 20 days working as his assistant, I had a wonderful close relationship with John and I can sincerely say that he was one of the 2 best bosses I ever had. I used to tell all my friends that this man was sent my way by God. I will sorely miss him for a very long time.
Lucci Casu
We are saddened to learn about the passing of a dear friend to NORD and integral member of the rare disease community, John Walsh, founder of the Alpha-1 Foundation. John was a patient and leader in both COPD and Alpha-1 and dedicated his life to finding a cure. NORD honored John with a Lifetime Achievement Award in 2014, and we will always remember him fondly.
National Organization of Rare Diseases
John was a twin, and I have nine-year-old twin girls. He always played nicely with my girls when we visited the Alpha-1 office in Miami. He shared his ideas for knowing which girl is first-born, as was he (the first-born fraternal twin is usually shorter and extroverted, for example). One night, we went to a Miami Heat game with the Alpha-1 staff, and were directed to take the public entrance to the stadium. When he saw the disappointment in the twins' faces, John whispered to the girls, with a twinkle in his eyes: "Take this special elevator with me. It's easier to beg forgiveness than to request permission!"
Adeyela Albury Bennett
John was an absolute legend in the field of patient advocacy. He was never shy to take the most complex issues head on. As a former Board member of the National Health Council, John not only served as a champion for those with Alpha-1 and COPD, but for all people with chronic conditions. Above all, John was one of the warmest, kindest men I ever knew. I am saddened by his passing but feel blessed to have been able to call him a colleague, a mentor, and a friend.
Marc Boutin, JD, CEO, National Health Council
In the Alpha-1 Community I am mostly know as DC Young's wife and that is OK. He is my Alpha Male. John Walsh always knew me and greeted me as Claudia. He was very personable. I credit him with the blessing in my life of still having DC and am grateful for all John has done.
Claudia Young
John was Alpha-1 Canada's generous mentor is so many ways. In the early days of our organization's humble beginnings John came to our aid extending his hands across the border sharing brochures/publications, insights, collaborative opportunities and most importantly friendship. He brought us into the Alpha-1 fold with seamless integrity where we remain today. Thank you/ Merci John! In the night of death Hope sees a star And listening love Can hear the rustle of a wing!
Mimi McPhedran
He was such an amazing man who helped so many people in this world. He has been and will continue to be missed by so many people.
Mary Gilmartin
His passion for finding a cure for Alpha-1 was such an inspiration to us all.
His leadership will keep driving us all to continue his mission.
Peg Iverson
I will be forever grateful for John’s leadership, dedication, and his relentless search for the cure. The community of followers that he has built through the Foundation and AlphaNet is truly amazing. I am determined now more than ever to carry on John’s mission. Rest in peace John. We will not rest until we realize your dream.
Jim Quill
My prayers and thoughts are with Diane & Family. I've known John since 1988 back in the NIH days when we were subjects being studied to find out more about this disease Alpha-1. John was and is one of my few heros in life. We enjoyed many special times over the years, and he will remain in my heart .Until we meet again my friend. Thank you for being a part of my life.
Gus Straub
John was a visionary, a courageous and wonderful leader and friend. He will be dearly missed.
Alan Barker, MD
I had the honor of working for this extraordinary man; kind, smart and with a great sense of humor. He allowed me to be my creative self while he gave me the opportunity to learn. Because of him, I have dedicated myself to the non-profit sector and to helping others. If he could build an extraordinary organization as he battled Alpha-1, I could certainly do my little thing. Thanks John!
Emily Marquez
I was introduced to John by Chip Withers over breakfast shortly after my lung transplant. We met again for lunch a few years later after I formulated the idea for the Lung Transplant Foundation. He shared with me and encouraged me to press forward. He was my friend, inspiration and role model and will be missed by all in our communities.
Jeff Goldstein
I am the surviving spouse of Billy McClellan, an SZ liver-affected Alpha who passed in 1994. I met John at one of the educational conferences I attended to learn about the genetic disorder that took my husband from me. His amazing energy and dedication, along with his kind and compassionate persona, made me a lifelong fan. I will always consider him a true hero for all he has done for the Alpha community. We have lost a star here on earth, but heaven's light is shining a lot brighter now. Rest in peace, John and fly with the angels. Breathe deep and breathe free. Your earthly mission is done and what an amazing one it was!
Rose McClellan
John was tremendous inspiration for patients, physicians, researchers, leaders and friends. His dedication to finding cure for Alpha-1 Deficiency and emphysema has been a great story of success. John will always remind us with the best in humanity.
Tony Eissa, MD
We are so blessed to have met and been a part of the life of this Gentle-Man. He was so caring of all he met in the program whether they shared the living with Alpha 1 or lived with one whom suffered by it. I met John at Terry Young's funeral after talking with him several times on the phone and then again after which he always encouraged continual active support in any way thereby giving extra physical outlet. His talks were always informative and all questions were answered if not then, soon after.
Our prayers with his family and his Alpha family
Pete Laughlin
I was introduced to John at my 1st conference in Washington, DC. Of course, I already knew who he was but I was just an Alpha. He stopped and we chatted for a few minutes. My impression of him was of a person that, regardless of who you were, whether you were the President of the USA or the janitor, you were important to him. Now as a new Support Group Leader my goal is to honor his legacy and help as many Alphas as possible. Soar with Angels and watch over us John.
Cassie Renfro