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Leading Breakthroughs in Blood Cancer Care: E. Anders “Andy” Kolb, MD

January 24, 2024

February 2024

In this issue, E. Anders (Andy) Kolb, MD, talks about serving families with blood cancers, attending the Dare to Dream Summit, and connecting with staff, volunteers, and donors in his role as president and CEO of the Leukemia & Lymphoma Society.

E. Anders “Andy” Kolb, MD

Anders “Andy” Kolb, MD


Organization: The Leukemia & Lymphoma Society (LLS)

Title: President and CEO

Specialty: Pediatric Hematology/Oncology

Years Practicing: 22

Last May, I Ieft my role as director of the Moseley Foundation Institute for Cancer and Blood Disorders at Nemours Children’s Health in Delaware to become president and CEO of The Leukemia & Lymphoma Society (LLS).

Although I no longer make hospital rounds or work in the lab, I still serve families dealing with blood cancers — though I have many more meetings and emails now! I’m traveling more too, often to LLS events where I love connecting with staff, volunteers, and donors.

I recently spent several days in Washington, D.C., at the LLS Dare to Dream Summit, a conference focused on our pediatric initiative. Here’s what a day looked like that week as I worked from the road.

4:30 a.m.: I always wake before dawn to fit in a workout. Today I’m on the bike in the hotel gym, training for America’s Most Beautiful Bike Ride in Lake Tahoe in June. The last time I rode a bike was probably in middle school, so I have a bit of work to do if I’m going to make it around Lake Tahoe.

5:30 a.m.: I savor my daily triple-shot espresso while checking the ESPN app for sports news. After showering, I answer emails and review copy from our communications team.

7:30 a.m.: I have a quick virtual touch-base with my executive leadership team — we do three each week, though not usually this early! I learned from more than 20 years in clinical medicine that frequent team huddles help maintain alignment and a common focus.

Dr. Kolb and LLS’s Chief Medical Officer Gwen Nichols share pediatric progress at the Dare to Dream Summit.
Dr. Kolb and LLS’s Chief Medical Officer Gwen Nichols, MD, share
pediatric progress at the Dare to Dream Summit.

8:00 a.m.: Off to a reception to welcome key supporters of the Dare to Dream Project, which is all about accelerating pediatric-focused research, bringing safer treatments to kids, expanding resources for families and survivors, and advocating to improve children’s access to care. I’m looking forward to personally thanking the dedicated partners and advocates making this possible.

8:45 a.m.: Time for the opening session! I’m presenting to a packed ballroom alongside LLS’s chief medical officer. I focus on the PedAL master clinical trial for children with acute leukemia. It will expedite less toxic, more effective treatments. Currently, 80% of childhood cancer survivors develop chronic and debilitating health issues from harsh one-size-fits-all chemotherapy, and there are still many children who do not survive their cancer. There have been hurdles to overcome, but I’m proud to share that both the screening trial and therapeutic trial are underway globally.

Afterwards, I watch staff presentations on research and resources. I’m thrilled that we have so many health care professionals in attendance who can share our free resources with families who may not know about them. I have an opportunity during these sessions to reconnect with a friend from my fellowship. He now works for the pharmaceutical industry but came to the conference to sit and work alongside patient and family advocates. It is a nice reminder that pediatric oncologists never actually stop fighting and advocating for children with cancer and their families.

11:15 a.m.: I’m having lunch with the Dare to Dream team, a powerhouse group of volunteer leaders raising critical funds through a capital campaign–style approach. One of my priorities is increasing transformational gifts, and this group will help make that happen.

12:15 p.m.: A panel called “Meeting the Challenge of Pediatric Oncology Drug Development” features experts from the National Institutes of Health, PedAL leadership, our federal affairs team, and a biopharma company. It’s inspiring to see colleagues from my past and present professional life so engaged in finding solutions. The conversation is moderated by Julie Guillot, who lost her son Zach to acute myeloid leukemia (AML) when he was just 9 years old. She’s a fierce advocate for families.

1:30 p.m.: I prep for tomorrow’s advocacy day on Capitol Hill. I’ll be asking legislators to fund critical childhood cancer research and co-sponsor the Accelerating Kids’ Access to Care Act, which will improve children’s access to specialty health care. Nearly 250 LLS advocates will be lobbying, too.

Dr. Kolb and LLS advocates gather on Capitol Hill to lobby for pediatric research and policy.
Dr. Kolb and LLS advocates gather on Capitol Hill to lobby
for pediatric research and policy.
 

2:00 p.m.: I sneak away for a virtual meeting with a mission-aligned foundation to discuss opportunities for collaborative work. Every foundation brings a unique perspective and skillset to the table. One of my goals for LLS is to build strategic partnerships with other foundations to maximize impact and minimize costs.

5:30 p.m.: Before we break to get ready for dinner, I’m back on stage to introduce Dare to Dream Ambassador Courtney Addison, who gives an emotional update on her son Cayden. In spring 2020, Cayden was diagnosed with a high-risk form of acute lymphoblastic leukemia. He completed his initial treatments in spring 2022 but relapsed in February 2023 and started chimeric antigen receptor (CAR) T-cell therapy that May. Courtney tearfully shared that Cayden would need another round of CAR-T, as recent tests showed the cancer is still there. I’m incredibly inspired by Courtney and all the parents who courageously share their experiences to help drive change for other families.

6:00 p.m.: I head to my room to answer more emails and call my wife.

6:45 p.m.: During cocktail hour, I take lots of selfies with staff and volunteers. The Dinner of Dreams is co-hosted by Alex Okafor, a nine-year National Football League veteran and Super Bowl LIV champion. He helped launch our Scholarship for Blood Cancer Survivors three years ago and continues to support it in honor of his mom who died from AML. I try to get a selfie with Alex, but the line is out the door! The dinner winds down with awards to our Dare to Dream ambassadors. Then 11-year-old survivor Xavier brings down the house with his rendition of the song “The Champion.” What an ending and a fitting tribute to all who champion our mission.

10:00 p.m.: I’m back in my room, reflecting on the success of this long but incredibly impactful day. I wind down by watching some hilarious TikTok videos my adult sons texted me. Then I head to bed, excited for the day ahead.

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