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 MYELOMAMultiple 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
FOUNDATIONFounded 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): @IMFmyelomaInstagram: @imfmyelomaFacebook: @myelomaLinkedIn: International
Myeloma Foundation
Media Contacts:
Peter AntonPanton@myeloma.org
Jason LondonJlondon@myeloma.org