The International Myeloma Foundation Mourns the Passing of IMF Board Member and Support Group Leader Jack Aiello
STUDIO CITY, Calif., July 16, 2024 (GLOBE NEWSWIRE) -- Today, the International Myeloma Foundation (IMF) announced with great sadness, the passing of one of the IMF’s Board Members, Myeloma Support Group Leader Jack Aiello, who lived with myeloma for 29 years until he peacefully passed this Saturday, July 13, surrounded by family and friends.
“I knew 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. The myeloma community is grateful to Jack and will miss him. I will miss him personally,” said IMF Chairperson of the Board Dr. S. Vincent Rajkumar.
"Jack's legacy lives on in our unwavering commitment to the myeloma cause. His tireless advocacy for patient inclusion in research will continue to inspire us. As we mourn his loss, the global outpouring of love on social media is a testament to the magnitude of his impact. We will honor his memory by redoubling our efforts to ensure myeloma patients can live life to the fullest, unburdened by the disease," said IMF President & CEO and 28-year myeloma patient Yelak Biru.
“Jack helped the entire myeloma community from patients and care partners to healthcare professionals, whether it was one-on-one or on the global scale. In 2002, he stepped up to co-lead the Bay Area, CA Support Group where he was a member, and has been the North Star of that group for 22 years,” said IMF Vice President of Patient Support Robin Tuohy.
“It has been my privilege personally and professionally to have experienced Jack’s wisdom, passion, and most importantly, friendship for almost 20 years, sharing life’s milestones. We stand on the shoulders of Jack and others who were courageous, selfless people that made a difference for the better in our myeloma community and exemplified strength in fighting this disease together. I will always cherish our friendship and continue to do my best to keep paying it forward,” added Robin.
In July 2023, Jack was elected to the IMF Board of Directors. IMF President & CEO, and 28-year myeloma patient Yelak Biru commended Jack, saying that his, “tireless efforts in grassroots funding demonstrated his innovative thinking and passion for supporting the IMF’s key programs, which are crucial for the sustainability and growth of the organization. His active participation and valuable input helped shape the future direction of our organization, ensuring that patient perspectives and needs remained at the forefront of our endeavors.”
Honored and humbled by his election, Jack said, “I consider it an honor and privilege to be considered for a position on the IMF’s Board of Directors and hope to offer the patients’ perspectives on living with myeloma. Among its many accomplishments, 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, they have provided me with opportunities to grow in various roles of being a patient advocate: 1) I facilitate our support group, and they’ve helped me become a better support group leader; 2) I’ve been involved in public policy, having gone to Washington and meeting with Congressional folks; 3) The IMF supports my fundraising activities, whether it be a poker party or a letter writing campaign; and 4) The IMF has emboldened my role in research advocacy, having sent me to ASH for many years and encouraged me to become a myeloma research advocate for SWOG, which develops clinical trials. Now, I am able to give back at the Board level.”
Jack worked in various technical sales and marketing positions (including Intel Corporation and GRiD Systems) for 25 years before retiring in 2001. He started actively volunteering for various cancer organizations after his retirement.
His work was firmly embedded and closely aligned with all the IMF stands for. In an interview on the IMF podcast “A Day in the Life,” Jack said, “The most important advice I can give [to newly diagnosed multiple myeloma patients] is to get educated about myeloma because it’s always changing.”
After being diagnosed with multiple myeloma in 1995, Jack did just that. When he was initially diagnosed, Jack was in the hospital getting chemotherapy infusion. But that did not deter him from walking with his IV pole into his first support group meeting.
Jack said, “That was actually one of the most important introductions for me, personally. I got to see someone living and breathing with the same disease I had.” His indomitable resilience served as an example for others.
Jack’s experience with this support group led to his commitment to “pay it forward.” Soon, he began facilitating the San Francisco/Greater Bay Area Multiple Myeloma Support Group. “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,” he shared with newly diagnosed patients.
With dedicated patient advocates and support group leaders like Jack, the IMF is stronger indeed. He did not stop at patient support. “I’m a big proponent of myeloma education, becoming your own best advocate, and then maybe even an advocate for our community,” he once said.
Jack represented the myeloma community in countless ways. He was a member of the IMF’s Global Myeloma Action Network (GMAN) since 2013 and served as a Patient Advocate on NCI Symptom Management and Quality of Life (SxQoL) Steering Committee. He was also 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.
Jack was a former Patient Advocate on the NCI Myeloma Steering Committee (MYSC); and the CIBMTR Consumer Advocacy Committee (CAC) (2013-2022). He was also an active participant of the International Myeloma Working Group (IMWG) Annual Meeting, and the annual IMF Support Group Leaders Summit (SGLS).
Members of the myeloma community will miss Jack’s spot-on reporting from the American Society of Hematology (ASH) meetings. The IMF sent Jack, as well as many other myeloma patients and care partners, to this meeting for the past decade to give their patient perspective on the latest blood cancer research.
Jack was known for creating his famous “five-page document,” with his takeaways from ASH. He would present it to his support group and share his write-up with Support Group Leaders around the country.
Hand-in-hand with his educational outreach, Jack worked to fund myeloma research. He organized a poker fundraiser for the IMF. The event, Texas Hold ‘Em, would gather around 40 people at Jack’s home and they would play cards for two hours. In one night, Jack and his “poker-playing family” would raise $5,000 for the IMF.
For nearly 20 years, Jack also coordinated a letter-writing campaign. He started with snail mail and then moved on to growing email lists and raised $60,000 for the IMF’s myeloma research initiatives.
The IMF will be forever changed by Jack’s contributions—advocating for patient education, changes in public policy, raising funds, and patient perspectives in clinical trial design for two decades of his life.
The International Myeloma Foundation sends its deepest sympathies, thoughts, and prayers to IMF Board Member and Support Group Leader Jack Aiello’s family members, friends, colleagues, and loved ones.
His legacy of service to others will live on and will serve as a lifelong inspiration for the IMF and the entire myeloma community.
ABOUT MULTIPLE MYELOMA
Multiple myeloma is a cancer of the bone marrow plasma cells — white blood cells that make antibodies. A cancerous or malignant plasma cell is called a myeloma cell. Myeloma is called “multiple” because there are frequently multiple patches or areas in bone where it grows. It often involves damage to bone and kidneys. Multiple myeloma is still incurable, but great progress has been made in terms of survival over the last two decades. The disease is twice as common and is diagnosed at a younger age in African Americans than white Americans. The most common presenting symptoms include fatigue and bone pain.
ABOUT THE INTERNATIONAL MYELOMA FOUNDATION SUPPORT GROUPS
The International Myeloma Foundation (IMF) facilitates a network of 150 myeloma-specific support groups that hold regular meetings in the U.S. and offer training for hundreds of dedicated patients, caregivers, and nurses who volunteer to lead support groups in their communities. The IMF’s annual Support Group Leaders Summit reaches more than 6,000 patients and caregivers. No matter where you are, the IMF can help you find or create a multiple myeloma support group and connect with other survivors and caregivers.
ABOUT THE INTERNATIONAL MYELOMA FOUNDATION
Founded in 1990, the International Myeloma Foundation (IMF) is the first and largest global foundation focusing specifically on multiple myeloma. The Foundation's reach extends to more than 525,000 members in 140 countries worldwide. The IMF is dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure by focusing on four key areas: research, education, support, and advocacy. The IMF has conducted more than 250 educational seminars worldwide, maintains a world-renowned InfoLine, and in 2001, established the International Myeloma Working Group (IMWG), a collaborative research initiative focused on improving myeloma treatment options for patients. In 2012, the IMF launched the Black Swan Research Initiative®, a groundbreaking research project aimed at curing myeloma. The IMF can be reached at (800) 452-CURE (2873). The global website is www.myeloma.org.
Follow the IMF on:
X (Formerly Twitter): @IMFmyeloma
Instagram: @imfmyeloma
Facebook: @myeloma
LinkedIn: International Myeloma Foundation
Media Contacts:
Peter Anton
Panton@myeloma.org
Jason London
Jlondon@myeloma.org
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