Leukemia & Lymphoma Society

Originally known as the Robert Roesler de Villiers Foundation, The Leukemia & Lymphoma Society was founded in New York City in 1949 by Rudolph and Antoinette de Villiers after the death of their son Robert from leukemia. The foundation was led by Antoinette, starting with a small Manhattan office with an initial investment of two thousand dollars and a small staff of volunteers.[4] At the time, there was a lack of effective medications, support facilities, and single-agent chemotherapy.[5]

The organization sponsored annual international research competitions with monetary awards to conduct research for treating leukemia. In 1951 the organization launched a contest for the best research paper on leukemia treatment. In the first year, there were 30 entries but no winners. The following year, Dr. Ludwik Gross was selected for the first prize and a grant to continue research.[5][6]

The organization changed its name to the Leukemia Society in 1955.[6] During this era, the Leukemia Society opened local chapters in the New York Metro area. By 1957, the Leukemia Society had chapters in Brooklyn, NY; Massapequa, NY; Little Neck, NY; and Westchester County.[7] The Leukemia Society created its first Patient Services Committee in 1959.

In 1966, the organization was renamed Leukemia Society of America. In 1968, the Leukemia Society of America published Closing In, Research on Leukemia, a book summarizing its progress in fighting leukemia.[8]

In 1968, the Patient Services Committee created the Patient Aid Programs that helped cover patient medications, lab fees, blood transfusions, transportation, and medical services support.[8]

William Dameshek organized and created the LLS grant review process in the early 1960s.[9] Due to his contributions to leukemia research and the organization, the Leukemia Society of America created the Dameshek Award in 1969.[10]

The Leukemia Society of America became known for its fundraising campaigns, such as Four Hours for Life in 1983 and the Leukemia Cup Regatta in 1994.[11]

In 1987 the Leukemia Society of America partnered with the Leukemia Research Fund (U.K.). It launched the peer-reviewed medical Journal, Leukemia. The Journal continues publishing today under the Nature Publishing Group.[12]

In 1990, the Leukemia Society of America published an adult patient support book, Coping with Survival, Support for People Living with Adult Leukemia and Lymphoma.[13]

The name was changed to The Leukemia & Lymphoma Society (LLS) in 2000 to reflect the organization's focus on all types of blood cancer. In 2004, LLS became affiliated with the Leukemia Research Fund of Canada, which became known as The Leukemia & Lymphoma Society of Canada.[14]

Dr. Louis J. DeGennaro was hired in 2005 and appointed President & CEO in 2014.[15]

The organization launched the LLS National Patient Registry in honor of Michael Garil.[16] Blood cancer patients voluntarily enrolled in the registry. The platform digitally compiles medical records so patients can access medical records across healthcare systems. In 2021, The Leukemia & Lymphoma Society Registry began collecting COVID-19 vaccine data from blood cancer patients. The platform provided the largest COVID-19 vaccine safety and efficacy data set in blood cancer patients.[17]

LLS was awarded a place on Fast Company’s 2022 Brands That Matter list.[18] The organization scored 96 points and has a Four-Star rating with Charity Navigator.[3]

In 2023, the organization announced E. Anders Kolb, M.D., as its President and Chief Executive Officer.[19]

Acute myeloid leukemia (AML) is a rapidly progressing disease that remains one of the most deadly blood cancers, killing more than 10,000 Americans a year. Despite advances in treating other blood cancers, the standard of treatment for AML – a combination of toxic chemotherapies – had changed little over the past four decades. In October 2016, LLS launched its Beat AML Master Clinical Trial, a collaborative precision medicine clinical trial that gives patients targeted therapies based on their genetic markers.[5]

LLS is leading the Beat AML Master Clinical Trial [21] and is the first nonprofit cancer organization to sponsor a clinical trial. The trial consists of a collaboration among multiple leading cancer centres and pharmaceutical companies, a clinical research organization, and a genomics analysis company. The protocol for the trial was developed with input from the U.S. Food and Drug Administration (FDA). The Beat AML Master Clinical Trial is expected to eventually include 500 patients and will continue for at least two years at between 15 and 20 clinical sites.

LLS currently contributes hundreds of thousands of dollars per year towards research into immunotherapies targeting acute lymphoblastic leukemia (ALL). As part of a wider funding effort including over a dozen other cancer immunotherapy projects, they hope to support more effective and targeted treatments utilizing the human body's own internal attack mechanisms.[22]

In late 2017, LLS awarded researchers at UNC School of Medicine a $600 thousand grant for clinical research on chimeric antigen receptor (CAR) T cell therapies with an immunosuppressive "safety switch". This approach could mitigate potentially lethal side effects of immunotherapy—such as cytokine release syndrome—for ALL treatments by halting the activity of infused T cells, in the event of a patient experiencing treatment toxicity.[22]

One of the 2011 Light the Night events held at Parramatta Stadium in Sydney, Australia.

The Light the Night Walk is the Leukemia & Lymphoma Society's walk to build awareness of blood cancers as well as raise money for research and support of patients and their families.[26][27] It is held in over 200 communities in North America each fall[28] as well as almost 100 in Australia.[29]

Walkers carry illuminated lanterns of different colors.[30] White balloons are carried by survivors, red by supporters, and gold balloons are carried by those walking in memory of a loved one they lost.[30] In Australia, gold balloons are used in memory of a loved one, and the color blue is used to show support.[29] Children, adults, and seniors all take part in the annual evening walk. The walkers all enjoy a leisurely pace, as there are no fitness requirements to participate. Usually, it is completed in under an hour. In some walks (Australia), a short route as well as an optional extended route is available.

Funds raised by participants support the Society's mission: cure leukemia, lymphoma, Hodgkin's lymphoma and myeloma, and improve the quality of life of patients and their families. Walkers who raise a minimum of $100 become a Champion for Cures and are honored with a Light the Night t-shirt, balloon, and wristband for food and refreshments at the walk.

The 2011 celebrity ambassador for the walk was Michael C. Hall. At 38 years old, he was diagnosed with Hodgkin's lymphoma. Past national spokespeople include Tina Fey in 2009[31] and Cynthia Nixon in 2007.[32]