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Volunteers: The Engine Powering LLS’s Mission

By E. Anders Kolb, M.D., President & Chief Executive Officer | May 25, 2024
Group of people putting hands in center


I was always aware that volunteers with The Leukemia & Lymphoma Society (LLS) drive impact for blood cancer patients and families. But it wasn’t until Thanksgiving Day 2007 that I discovered the full force of their power. My wife, Holly, had recently been diagnosed with follicular lymphoma and our family was still reeling from the news. She was feeling quite ill, and we were exhausted with worry and trying to keep life as normal as possible for our two young children. After dinner my older brother jumped up from the couch and announced he was going to do an LLS Team in Training marathon in Holly’s honor. I watched with admiration as he set up his fundraising page, began building his team and reached out to his network for donations. By the time he crossed the finish line at the San Diego Rock and Roll Marathon, he had raised thousands of dollars for LLS to fund research, support services and advocacy for blood cancer patients and their families. 

But it wasn’t the amount of money raised that was so inspiring. It was the vibrant community of committed and compassionate LLS volunteers running and walking with him—all dedicated to transforming the landscape of blood cancer treatment and care. I found them so motivating that I became an LLS volunteer myself, participating in many of LLS’s endurance-based fundraising programs, competing as a Visionaries Of The Year Candidate in Delaware, and joining my local LLS Board of Trustees. My involvement with LLS grew when I became the co-chair of LLS’s PedAL master clinical trial for pediatric acute leukemia, the cornerstone of LLS’s Dare to Dream Project.  And since May 2023 I’ve had the honor of leading this life-changing organization and meeting many more of LLS’s phenomenal volunteers, who continue to inspire me every single day. 


A Grateful Shout-Out to All LLS Volunteers

 

April is National Volunteer Month, and I want to thank you for your time and dedication all year round. Whether participating in fundraising events or leadership campaigns, offering peer-to-peer support to blood cancer patients, advocating for policy change, or getting involved in any other number of ways, you are the heart, soul, and voice of LLS.  

For many of you, blood cancer has hit home, as it has in my own family. You might have a parent, spouse, sibling, child, close relative, or friend dealing with diagnosis, treatment, or recurrence. You may be a survivor yourself, living with fear that the cancer could return. Or sadly, you may have lost a loved one to a blood cancer. Perhaps you don’t have a personal connection but volunteer simply because you want to make a difference in the world. I am grateful to all of you for your commitment, generosity of heart and spirit, and for inspiring others to support LLS’s lifesaving, life-changing mission.

As a volunteer myself, I’ve experienced how challenging it can be sometimes. I’ve encountered the frustration of donor fatigue when fundraising for LLS events. I’ve learned first-hand that when you do a good job with one volunteer project, you often get asked to do another and then another until volunteering starts to feel like a second full-time job. Thank you for your passion, patience, and perseverance. Your efforts truly are driving progress for blood cancer patients and families. LLS couldn’t exist without you.

I also know how hard it can be to tell your personal story. I still get choked up when I talk about Holly’s illness. She's faced multiple relapses, and new therapies supported by LLS continue to be her best hope for prolonged remissions and even, one day, for a cure.  The experience has given me a greater appreciation for what blood cancer patients and families endure, and how volunteers like you provide support and hope. 


Celebrating LLS’s 2024 National Volunteer Award Winners

 

As a pediatric hematologist oncologist, and now as LLS President and CEO, I’ve met many parents who’ve lost children to blood cancer. Yet as LLS volunteers, they bravely tell their heartbreaking stories over and over to help other families.

 

J.J. Duncan, Recipient of LLS President's Award 


J.J. Duncan is one of those parents and is the recipient of LLS’s top volunteer honor, the 2024 President’s Award. It recognizes individuals who have shown excellence in making substantive transformational impact at LLS. 

After losing her 11-year-old son Mason to leukemia, J.J. channeled her grief into advocacy for pediatric patients and their families. 

As a member of LLS’s national Pediatric Advocacy Committee and the California Advocacy Committee, J.J. shares her family’s story through video, written reports, and in-person legislative meetings.

I first met J.J. during LLS’s Lobby Day in May 2023 and again in October at LLS’s Dare to Dream Summit. At these Washington, D.C. events, J.J. talked about the red tape and delays her LA-based family experienced when trying to get Mason into a desperately needed clinical trial in Houston; and she met with senators and members of Congress to advocate for the Accelerating Kids’ Access to Care Act (AKACA). This legislation will drastically reduce barriers that impede children who are on Medicaid from receiving needed specialty care outside their home states. Thanks to J.J. and other volunteer advocates, AKACA currently has 85 House cosponsors and 36 Senate cosponsors. And we expect those numbers to continue growing. When passed into law, AKACA will make it much easier for families who must travel across state lines to get their children the care they need. 

J.J.’s efforts to end blood cancer also extend beyond work with LLS. She and her wife have started the Not Today Cancer Foundation in honor of Mason. The Foundation’s flagship event is an annual 5K run/walk to raise funds for pediatric cancer, which had more than 700 participants and raised more than $50,000 in 2023. That’s volunteer impact in action!


Gurshaman Baweja, Recipient of LLS 2024 de Villiers Family Legacy Award 


Gurshaman Baweja is another parent who honors his child’s memory through volunteering for LLS. His daughter Keerat was diagnosed with leukemia in 2019 and died in 2020 at the age of 23—not from the cancer itself, but from the effects her treatment had on her body. 

From the moment I met Gurshaman, I was blown away by his kindness, empathy, philanthropy, and advocacy, which have earned him LLS’s 2024 de Villiers Family Legacy Award. This award recognizes individuals who have raised funds and influenced policy with a passion and effort that matches that of Rudolph and Antoinette de Villiers, who founded LLS in 1949 after losing their 16-year-old son Robbie to leukemia. 

Gurshaman has worked tirelessly in his community as a mission speaker and fundraiser and his Light The Night team has raised nearly $300,000 over the past two years. Gurshaman says, “Cancer is tough, but Keerat was tougher, and we owe it to her to keep fighting.” Despite her illness she co-captained her dance team, graduated with a Bachelor’s degree in Mechanical Engineering from UT Austin, and started her dream job at Boeing. By sharing Keerat’s story, Gurshaman inspires others to join him in supporting LLS’s mission. He is especially passionate about urging lawmakers to fund pediatric research, as a member of the Texas Advocacy Committee, an LLS representative at the Alliance for Childhood Cancer, and a point person for local in-district meetings with members of Congress from Texas. He and his wife Tripat and daughter Rasna are also setting up a scholarship foundation in Keerat’s name for young women interested in engineering. Gurshaman is a wonderful example of how one person can advance LLS’s mission through leadership, commitment, and community outreach. 

 

Dr. Matthew Matasar, Recipient of LLS 2024 Quality of Life Award 


Supporting those impacted by blood cancer is integral to helping patients live longer, better lives. It’s a role that Dr. Matthew Matasara hematologist oncologist specializing in lymphoma and Chief of the Division of Blood Disorders at Rutgers Cancer Institute of New Jersey, takes to new heights as an LLS advocate. Countless patients over the years have come to LLS looking for support or a second opinion, and Dr. Matasar has personally adjusted his schedule in order to see these patients within days. His compassion shines through every interaction.  

Dr. Matasar has served on the Board of Trustees for LLS’s Long Island and New Jersey regions, referring patients and families to LLS’s free resources and making sure his colleagues do, too. He’s chaired and participated in many local Light The Night walks, raising awareness and funds, and increasing Light The Night engagement at his healthcare facility. He also often presents at LLS patient-facing programs both locally and nationally.  

And with an LLS research grant, Dr. Matasar engaged with more than 200 long-term survivors of Hodgkin lymphoma to determine those at greater risk for developing heart disease after radiation therapy to the chest and which diagnostic tests are best at detecting heart disease before damage occurs.  For his many years of involvement and relentless patient support, LLS honors Dr. Matasar with the 2024 Quality of Life Award.

Congratulations to our National Volunteer Awardees, and every LLS volunteer! You can read more about each of our awardees here


You are all champions to me!  


Since that Thanksgiving Day in 2007, I’ve seen and felt the incredible power of LLS volunteers—power that is generated by all of you!  You’ve inspired me so much that I’ll be riding 100 miles around Lake Tahoe in America’s Most Beautiful Bike Ride on Sunday, June 2, 2024, alongside my brother. We’ve each participated in many LLS athletic events over the years, but this is the first time we’re doing one together.

Even though I’ve never ever pedaled that far before, I know I’ll get there because you’ve all shown me what is possible with grit and determination. Thank you for those lessons, and for all you do for LLS.