“We’ve all been there and being part of the myeloma community allows us to share with others who are on a similar journey. Together, we are stronger.” – Jack Aiello
The International Myeloma Foundation honors Jack Aiello and his legacy of service to the myeloma community.
The International Myeloma Foundation (IMF) and members of the myeloma community mourn the loss of beloved IMF Board Member and Support Group Leader Jack Aiello, who peacefully passed away on Saturday, July 13th, at age 74, surrounded by family and friends.
It was only a year ago when Jack was elected to the IMF Board of Directors—a fitting appointment for his “tireless efforts in grassroots funding, innovative thinking and passion for supporting the IMF’s key programs, and active participation and valuable input when it came to shaping the future direction of the IMF, ensuring that patient perspectives and needs remained at the forefront of the IMF’s endeavors,” said IMF President & CEO and 28-year myeloma patient Yelak Biru.
Jack was deeply honored and humbled by his election as an IMF Board Member and expressed his hope “to offer the patients’ perspectives on living with myeloma.”
“The IMF does a fabulous job of offering patient education and hope, which are in line with my personal goals of getting patients past those initial feelings of being overwhelmed and scared. I can personally attest to this, having first connected with the IMF shortly after I was diagnosed in 1995, and attending their Patient and Family Seminar in 1996. In the years that followed, the IMF provided me with opportunities to grow in various roles of being a patient advocate,” said Jack, adding that he was glad “to be able to give back at the Board level.”
"Jack was more than just a friend, mentor, and elder in the myeloma community; he was a guiding light. His sharp wit and unwavering kindness left an undeniable mark on everyone who knew him. I will miss our epic debates (or bickering!), but most of all, we'll cherish his smile – a reflection of the warmth that inspired us all," said Yelak.
"One of Jack's proudest moments was conquering myeloma and walking his daughters down the aisle. His family, especially his grandchildren, were the absolute apple of his eye, and seeing the impact of research fueled his passion for the cause," Yelak recounted.
“I am so saddened to hear this news. I have known Jack for nearly 20 years. He has been an inspiration to me and the entire myeloma community for so long. He never hesitated to advocate for patients and improved care, challenging experts in the field with tough questions and critiques. I remember so many interesting discussions with him. Early on, when I was debating the strategy of cure versus control in myeloma, he would push back strongly as a champion for the curative strategy. With his own personal example, it was a very powerful testimony. I will miss him. We will miss him,” said IMF Chairperson of the Board Dr. S. Vincent Rajkumar.
IMF Vice President of Patient Support Robin Tuohy spoke fondly of Jack: “There are really so many wonderful memories with Jack, for which I’m grateful to have. Our talks about myeloma, of course, but we are so much more than our myeloma. It’s the little things and big milestones that we cherish and will always keep alive in our hearts and minds.”
“One of my favorite memories happened during the 2017 IMF Support Group Leaders Summit. I had asked Jack, Jim Omel, and Yelak Biru if they would present on ‘Clinical Trials: Concept to Approval to Accrual.’ As expected, these three worked together for months to come up with a presentation for leaders to better understand clinical trials. I’m sure it was memorable for every leader in attendance — the content was clear and ‘real,’ with each of them also sharing photos showing how they have been personally affected by clinical trials. Jack’s photos showed his growing family, with Nell, their children and grandchildren through the years. The presentation was a tearjerker for sure, but then at the end, they surprised me with a funny last slide and photo titled ‘Robin’s Angels’ with the 3 of them posing to reference ‘Charlie’s Angels,’ as I was frequently calling them about the status of their presentation,” recounted Robin.
Robin’s husband, Support Group Leader and 24-year myeloma patient Michael Tuohy also shared one of his fond memories with Jack: “Jack and I have been friends for about 20 years. We’ve attended many IMF programs together, including ASH. Conversations about myeloma were always a learning experience, but it was also an opportunity for us, as patients, to advocate and push for patient needs and quality of life issues; to educate others from a patient perspective; and to ensure that our voices are heard. Jack did all that to the highest level, earning everyone’s respect.”
“One of my fondest and most recent memories with Jack is when we were at a program sharing patient concerns, challenges and possible solutions. After the meeting, we got together and ended up talking about a favorite pastime: sports. The Giants and Jack’s beloved 49ers happened to be playing that night, so we got a good table in the lounge and talked about life and the game. As Jack predicted, the 49ers won. But the highlight of the evening was sitting at that table, talking and laughing together,” shared Michael.
A Life of Resilience, Education, and Advocacy
Jack graduated from the University of California, Santa Cruz in 1971 with BS degrees in Computer Science and Math.
From 1971-1976, he worked as an Instructor at Massachusetts Institute of Technology (MIT) where he also earned his MS and EE degrees in Computer Science, and an MBA minor.
For 25 years, Jack worked in various technical sales and marketing positions (including Intel Corporation and GRiD Systems) before retiring in 2001. He then started actively volunteering for various cancer organizations after his retirement.
Jack was diagnosed with multiple myeloma in 1995. However, not even a chemotherapy infusion could stop him from attending his first support group meeting. He said that it was “one of the most important introductions” where he “got to see someone living and breathing with the same disease I had."
Because of his memorable first support group experience, Jack decided to pay it forward and began facilitating the San Francisco/Greater Bay Area Multiple Myeloma Support Group.
Jack also represented the myeloma community in countless ways—as a member of the IMF’s Global Myeloma Action Network (GMAN); a Patient Advocate on NCI Symptom Management and Quality of Life (SxQoL) Steering Committee; a member of NCI’s Patient Advocate Steering Committee (PASC), as well as the SWOG Cooperative Group Myeloma and Patient Advocacy Committees; an Emeritus Board of Director of the Patient Empowerment Network; a participant at Stanford’s Scientific Review Committee; and a volunteer for the Leukemia and Lymphoma Society (LLS) First Connection and Cleveland Clinic Fourth Angel programs.
He was a former Patient Advocate on the NCI Myeloma Steering Committee (MYSC); and the CIBMTR Consumer Advocacy Committee (CAC) (2013-2022). Jack was also an active participant of the International Myeloma Working Group (IMWG) Annual Meeting, and the annual IMF Support Group Leaders Summit (SGLS).
Jack’s dedication and resilience were indomitable—a wellspring of inspiration for patients who were going through their own myeloma journeys.
In an interview on the IMF’s “A Day In the Life” podcast, the most important advice that Jack gave to newly diagnosed myeloma patients was “to get educated with myeloma because it’s always changing.”
“I think it boils down to however best you are able to educate yourself: Get educated about your myeloma.”
Jack goes further to define what resilience meant to him: “Resilience, for me, means encouragement with hope. And hope, for me, comes with knowledge, and knowledge is from education.”
“I sincerely believe when one of my friends always says that knowledge might be the best medicine of all. So that advice for me really comes down to learn all you can about myeloma.”
“I’m a big proponent of myeloma education, becoming your own best advocate, and then maybe even an advocate for our community,” he also once said.
Jack took patient education a notch higher with his consistent reporting from the American Society of Hematology (ASH) meetings, where he and several other myeloma patients and care partners reported on the latest blood cancer research from a patient perspective.
The myeloma community will surely miss Jack’s spot-on reporting as well as his famous “five-page document,” of takeaways from ASH, which he would present to his support group as well as other Support Group Leaders across the U.S. We encourage you take a look back at his blogs from the American Society of Hematology Annual Meeting & Exposition through the years:
Apart from his vital role in patient education and advocacy, Jack will also be remembered for his fundraising efforts for myeloma research. He organized a Texas Hold ‘Em event where he would gather 40 people at his home to play cards, raising as much as $5,000 for the IMF in one night.
Jack also coordinated a letter-writing campaign which ran for almost 20 years. He started with snail mail and then moved on to growing email lists and raised $60,000 for the IMF’s myeloma research initiatives.
Jack’s huge contributions to the IMF for the past two decades will forever be etched in our hearts and minds—advocating for patient education, changes in public policy, raising funds, and patient perspectives in clinical trial design.
The IMF extends its deepest sympathies, thoughts, and prayers to Jack’s family members, friends, colleagues, and loved ones.
His legacy will live on, serving as a lifelong inspiration for the IMF and the entire myeloma community.
The IMF invites everyone in the myeloma community to pay tribute to Jack by sharing their fond memories, anecdotes, stories, and insights learned through our social media channels:
X (Twitter): @IMFmyeloma
Instagram: @imfmyeloma
Facebook: @myeloma
LinkedIn: International Myeloma Foundation