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.
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
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 !
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.
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.
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.
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!
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.
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.
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.
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 !!!
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.
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.
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.
“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.”
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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!
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.
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!
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
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.