It is with great sadness that we share the news that Alpha-1 community leader Fred Walsh passed away peacefully on September 29, 2024, at 75 years old surrounded by his family. As both the Vice Chair of the Alpha-1 Foundation (A1F) Board of Directors and an AlphaNet Coordinator, Fred served as a key figure in the Alpha-1 community. Since the establishment of these organizations in 1995 by his twin brother John W. Walsh, Susan Stanley, and Sandy Lindsey, Fred dedicated his life to supporting and educating his fellow Alphas.
As a lifetime resident of Massachusetts, Fred lived in Duxbury with his wife, Pam. Together, they built a beautiful family with their two daughters, Kailey and Chase, son-in-law Michael, and two grandchildren, Dylan and Oliver, along with grand dog Seamus.
Fred was an active Alpha-1 patient voice on the Alpha-1 Foundation’s Board of Directors. In 1995, he began working for AlphaNet as a Coordinator and served in that role helping to educate and support Alphas for over 29 years. In 2016, Fred received a double lung transplant, and following his recovery, immersed himself into giving back to the Alpha-1 community. Fred was a leader and member of the hard-working Alpha-1 Support Group in Massachusetts. He helped build fundraising efforts through annual events like the Team Alpha-1 Escape to the Cape and A1F Celtic Connection.
“Fred was the quintessential Alpha, always willing to lend an ear, offer guidance and advice, and help all Alphas wherever they were in their journey. He was a champion of the Alpha-1 Foundation and AlphaNet missions, and his positive spirit, warmth, and passion are a legacy that we can all aspire to,” said Scott Santarella, President and CEO, Alpha-1 Foundation.
Fred was born on February 4, 1949, in Arlington, Massachusetts. His mother, Helen, who was an athlete in her youth and a non-smoker, struggled with lung issues which included early-onset emphysema, a diagnosis that unfortunately was not fully understood at the time. The loss of Fred’s mother during his teenage years was a defining moment in his family’s life, and Fred emerged with a strong desire to understand and address his own health issues, culminating in his diagnosis as a ZZ Alpha in 1989.
Seeking a deeper understanding of Alpha-1, Fred, along with his brother John, joined the National Institute of Health’s (NIH) Alpha-1 longitudinal study in 1991, where they not only gained valuable insights about their health but also forged connections with fellow Alphas, physicians and researchers inspiring them to advocate for further research and community support. During his time in the study met many prominent Alpha-1 physicians and researchers, including Dr. Mark Brantly.
“It was my good fortune to be a friend of Freddy for more than 30 years. For much of the time I knew Freddy he had significant shortness of breath. However, his suffering never showed because he always had a smile on his face, a joke on his lips and a twinkle in his eye. Freddy was one of the most generous, kind and loving people I have known on this earth. What he gave me in our 30 years as a friend, I will cherish until it is my time to say goodbye to my family and friends. I miss you, Fred,” said Dr. Mark Brantly, Alpha-1 Foundation Board of Director.
It was during this time that the idea of the Alpha-1 Foundation and AlphaNet was created, and a community was established to continue Alpha-1 research and generate funding with the mission to find a cure. Fred’s extensive background in counseling and teaching led him to become one of the first AlphaNet Coordinators, a position he held proudly for nearly three decades. In his role as a Coordinator, he was able to connect with and guide countless Alphas in navigating their health journey, especially as they faced challenges related to access to treatment and education.
“Fred lived his life thinking about and serving others. He was a joy to be around. Earlier this week, the AlphaNet Coordinator team got together and shared stories about Fred’s dedication, kindness, and wonderful sense of humor. We miss him but will honor his work with ours moving forward,” said Mark Delvaux, President and CEO, AlphaNet.
“We are heartbroken at the loss of our dear friend Fred. Since the earliest days of my involvement with Alpha-1 research and clinical care, Fred served as both a cheerleader and teacher, offering support and advice, and encouraging us to do the best we possibly can for Alphas. Despite his own medical challenges, Fred consistently looked out for the needs of others and many times in the past several years I answered my phone to find Fred on the other end of the line, asking me to help another Alpha in need. I am grateful for the time we spent together and will remember most his warmth, dedication to others, and sense of humor, which shone through no matter the situation,” said Dr. Andrew Wilson, Scientific Director, Alpha-1 Foundation.
Fred continued to exemplify the essence of the Alpha-1 community through his work as a Coordinator for the Northeast region and his leadership as Vice Chair of the Alpha-1 Foundation Board of Directors. His belief in patient empowerment resonated deeply, and he championed the idea that individuals must take an active role in their health and advocate for themselves. Fred remained hopeful for the continued growth and success of the Alpha-1 community, envisioning it as a beacon of hope for patients everywhere. His legacy, rooted in compassion, advocacy, and community, will undoubtedly inspire future generations of Alphas to connect, support, and strive for a brighter future.
“The Alpha-1 community lost a champion of the patients this past week with the passing of Fred Walsh. His death has shaken the foundations of the community because this quiet, gentle man impacted the lives of those suffering with Alpha-1, those caring for people with Alpha-1, and those working toward a cure for Alpha-1. The death of Fred Walsh is like an earthquake that has shaken the community to its roots. All we can do is carry one and attempt to fill the void as best we can and in the spirit of his gentle wisdom,” said Dr. Robert “Sandy” Sandhaus, AlphaNet Senior Medical Director and Alpha-1 Foundation Clinical Director.
“It is difficult for me to encompass all of what Freddy Walsh was in a simple statement. While his brother John was the face of the organization, Freddy was the perennial patients’ voice. He both prodded leadership gently while simultaneously being a fierce patient advocate. I could not have been successful as the Chair of the Alpha-1 Foundation Board of Directors without Freddy’s guidance, and I am profoundly saddened by his loss both personally and for our community. He has left indelible lessons with me in understanding the patients’ voices and I, like others, will continue to carry out his mission while he watches us from afar,” said Dr. Jeanine D’Armiento, Alpha-1 Foundation Medical Liaison.
“Fred was a truly gentle soul, a man of the people, loved by everyone whose lives he touched. With Fred, a problem shared was always a problem solved. He faced each day with grace, understanding, and a heart full of laughter. I will miss him deeply, but his beautiful spirit lives on in all of us. I am forever grateful to his family for sharing him with the Alpha-1 community,” said Angela McBride, Alpha-1 Foundation Senior Director of Corporate Relations and Strategic Alliances.
We send our deepest condolences to the Walsh family at this difficult time, and we ask that you keep them in your thoughts and prayers. As Fred would remind us, “Keep the Faith.”
The family has requested that donations be made in memory of Fred to the Alpha-1 Foundation. Condolence cards for his family can be sent to the Alpha-1 Foundation at 3300 Ponce de Leon Blvd., Coral Gables, FL 33134. A celebration of life is being planned for a later date.
Click here to make a donation in memory of Fred Walsh.
