The Leukemia & Lymphoma Society (LLS), a 501(c)(3) charitable organization founded in 1949, is a voluntary health organization dedicated to fighting blood cancer world-wide. The LLS mission is: Cure leukemia, lymphoma, Hodgkin's disease, and myeloma, and improve the quality of life of patients and their families. LLS funds blood cancer research around the world, provides free information and support services, and is a voice for all blood cancer patients seeking access to quality and affordable care.
LLS is headquartered in Rye Brook, New York, with 27 regional offices throughout the United States and five regional offices in Canada. The organization has raised and donated more than $1.6 billion (USD) to blood cancer research. LLS has five signature fundraising campaigns: Team In Training, Light The Night, Visionaries of the Year, Student Visionaries of the Year, and Big Climb. In addition to the signature campaigns, individuals can create their own fundraising campaigns utilizing social events, esports, and other activities done at their own pace.
The Leukemia & Lymphoma Society had a four-star rating with Charity Navigator in 2023, scoring 96 points out of 100.
History
Robert Roesler de Villiers Foundation (1949-1954) 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. At the time, there was a lack of effective medications, support facilities, and single-agent chemotherapy.
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.
Leukemia Society (1955-1965) The organization changed its name to the Leukemia Society in 1955. 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. The Leukemia Society created its first Patient Services Committee in 1959.
Leukemia Society of America (1966-1999) 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.
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.
William Dameshek organized and created the LLS grant review process in the early 1960s. Due to his contributions to leukemia research and the organization, the Leukemia Society of America created the Dameshek Award in 1969.
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.
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.
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.
The Leukemia & Lymphoma Society (2000-present) 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.
Dr. Louis J. DeGennaro was hired in 2005 and appointed President & CEO in 2014.
The organization launched the LLS National Patient Registry in honor of Michael Garil. 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.