The Leukemia & Lymphoma Society (LLS), a

501(c)(3) A 501(c)(3) organization is a United States corporation, Trust (business), trust, unincorporated association or other type of organization exempt from federal income tax under section 501(c)(3) of Title 26 of the United States Code. It is one of ...

charitable organization A charitable organization or charity is an organization whose primary objectives are philanthropy and social well-being (e.g. educational, Religion, religious or other activities serving the public interest or common good). The legal definitio ...

founded in 1949, is a voluntary health organization dedicated to fighting blood cancer world-wide. LLS funds blood cancer research on cures for

leukemia Leukemia ( also spelled leukaemia; pronounced ) is a group of blood cancers that usually begin in the bone marrow and produce high numbers of abnormal blood cells. These blood cells are not fully developed and are called ''blasts'' or '' ...

lymphoma Lymphoma is a group of blood and lymph tumors that develop from lymphocytes (a type of white blood cell). The name typically refers to just the cancerous versions rather than all such tumours. Signs and symptoms may include enlarged lymph node ...

Hodgkin's disease Hodgkin lymphoma (HL) is a type of lymphoma in which cancer originates from a specific type of white blood cell called lymphocytes, where multinucleated Reed–Sternberg cells (RS cells) are present in the lymph nodes. The condition was named a ...

, and

myeloma Multiple myeloma (MM), also known as plasma cell myeloma and simply myeloma, is a cancer of plasma cells, a type of white blood cell that normally produces antibodies. Often, no symptoms are noticed initially. As it progresses, bone pain, a ...

. It provides free information and support services, and it advocates for blood cancer patients and their families seeking access to quality and affordable care. LLS is headquartered in

Rye Brook, New York Rye Brook is a administrative divisions of New York#Village, village in Westchester County, New York, Westchester County, New York (state), New York, United States, within the administrative divisions of New York#Town, town of Rye (town), New Yo ...

, with 27 regional offices throughout the

United States The United States of America (USA), also known as the United States (U.S.) or America, is a country primarily located in North America. It is a federal republic of 50 U.S. state, states and a federal capital district, Washington, D.C. The 48 ...

and five regional offices in

Canada Canada is a country in North America. Its Provinces and territories of Canada, ten provinces and three territories extend from the Atlantic Ocean to the Pacific Ocean and northward into the Arctic Ocean, making it the world's List of coun ...

. The organization has raised and donated more than $1.7 billion (USD) to blood cancer research. The Leukemia & Lymphoma Society had a four-star rating with

Charity Navigator Charity Navigator is a charity assessment organization that evaluates more than 230,000 charitable organizations based in the United States, operating as a 501(c)(3) organization. It provides insights into a nonprofit's financial stability, adh ...

in 2023, scoring 97%.

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,

Ludwik Gross Ludwik Gross (September 11, 1904 – July 19, 1999) was a Polish-American virologist who discovered two different tumor viruses—murine leukemia virus and mouse polyomavirus—capable of causing cancers in laboratory mice. Biography Gross wa ...

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.Annual Report, Fiscal Year 1968-69, Leukemia Society of America, Inc. 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 William Dameshek (1900 in Voronezh – 1969) was an American hematologist. He graduated from Harvard College and Harvard Medical School and spent the early part of his career at Beth Israel Hospital (now Beth Israel Deaconess Medical Center). He w ...

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 Nature Portfolio (formerly known as Nature Publishing Group and Nature Research) is a division of the international scientific publishing company Springer Nature that publishes academic journals, magazines, online databases, and services in scien ...

. 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. 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 A COVID19 vaccine is a vaccine intended to provide acquired immunity against severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the virus that causes coronavirus disease 2019 ( COVID19). Knowledge about the structure and fun ...

data from blood cancer patients. The platform provided the largest COVID-19 vaccine safety and efficacy data set in blood cancer patients. LLS was awarded a place on Fast Company's 2022 Brands That Matter list. The organization has a Four-Star rating with Charity Navigator. In 2023, the organization announced E. Anders Kolb as its President and Chief Executive Officer.

Research

Since its founding, The Leukemia & Lymphoma Society has contributed more than $1.6 billion (USD) to blood cancer research. As there are no means of preventing blood cancers, LLS is focused on funding research for every type of blood cancer to advance treatments and cures. The organization funds research in areas of unmet medical need and helps to bridge the gap between academic discovery and drug development.

Acute leukemia

Acute myeloid leukemia

Acute myeloid leukemia Acute myeloid leukemia (AML) is a cancer of the myeloid line of blood cells, characterized by the rapid growth of abnormal cells that build up in the bone marrow and blood and interfere with haematopoiesis, normal blood cell production. Sympt ...

(AML) is a rapidly progressing disease that remains one of the most deadly blood cancers, killing more than 11,000 Americans a year. Despite advances in treating other blood cancers, the standard of treatment for AML – a combination of toxic chemotherapies – has 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 identifies targeted therapies for patients based on their genetic markers. LLS is leading the Beat AML Master Clinical Trial and is the first nonprofit cancer organization to sponsor a cancer clinical trial. The trial is a collaboration among multiple leading cancer centers, 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 The United States Food and Drug Administration (FDA or US FDA) is a federal agency of the Department of Health and Human Services. The FDA is responsible for protecting and promoting public health through the control and supervision of food ...

(FDA). The Beat AML Master Clinical Trial is expected to eventually include 500 patients and will continue for at least two more years at between 15 and 20 clinical sites.

Acute lymphoblastic leukemia

LLS currently contributes towards research into

immunotherapies Immunotherapy or biological therapy is the treatment of disease by activating or suppressing the immune system. Immunotherapies designed to elicit or amplify an immune response are classified as ''activation immunotherapies,'' while immunotherap ...

targeting

acute lymphoblastic leukemia Acute lymphoblastic leukemia (ALL) is a cancer of the Lymphocyte, lymphoid line of blood cells characterized by the development of large numbers of lymphoblast, immature lymphocytes. Symptoms may include feeling tired, pale skin color, fever, ...

(ALL). As part of a wider funding effort including over a dozen other

cancer immunotherapy Cancer immunotherapy (immuno-oncotherapy) is the stimulation of the immune system to treat cancer, improving the immune system's natural ability to fight the disease. It is an application of the basic research, fundamental research of cancer im ...

projects, LLS supports more effective and targeted treatments utilizing the body's own internal attack mechanisms. In late 2017, LLS awarded researchers at

UNC School of Medicine The University of North Carolina School of Medicine is the medical school of the University of North Carolina at Chapel Hill. It offers a Doctor of Medicine degree, along with combined Doctor of Medicine with Doctor of Philosophy degree and Doctor ...

a $600,000 grant to support

clinical research Clinical research is a branch of medical research that involves people and aims to determine the effectiveness (efficacy) and safety of medications, devices, diagnostic products, and treatment regimens intended for improving human health. The ...

chimeric antigen receptor In biology, chimeric antigen receptors (CARs)—also known as chimeric immunoreceptors, chimeric T cell receptors or artificial T cell receptors—are receptor proteins that have been engineered to give T cells the new ability to target a specific ...

(CAR) T cell therapies with an immunosuppressive "safety switch". This approach aims to mitigate the potentially lethal side effects of immunotherapy—such as

cytokine release syndrome In immunology, cytokine release syndrome (CRS) is a form of systemic inflammatory response syndrome (SIRS) that can be triggered by a variety of factors such as infections and certain drugs. It refers to cytokine storm syndromes (CSS) and occur ...

—by halting the activity of infused T cells, in the event a patient experiences severe treatment toxicity.

Patient support

The Leukemia & Lymphoma Society is a source of blood cancer information, education and support for patients, their families, survivors, and healthcare professionals. In 1997, LLS created the Information Resource Center (IRC) to provide blood cancer patients, their families, and healthcare professionals with accurate, current disease information, resources, and support. LLS Blood Cancer Information Specialists are master's level oncology social workers, nurses, and health educators. An LLS Blood Cancer Information Specialist can assist patients through cancer treatment, financial and social challenges, and can provide accurate, up-to-date disease, treatment, and support information. As a community-based voluntary health organization, LLS has regional offices throughout the United States and Canada to support blood cancer patients in North America.

Advocacy

The Leukemia & Lymphoma Society's Office of Public Policy advances LLS's mission through advocacy aimed at governmental decision-makers. Through LLS's nationwide grassroots network of more than 30,000 volunteers, LLS advocates for blood cancer patients at the state and federal level. These efforts help to increase federal and state research funds for blood cancer; expedite the review and approval for new blood cancer new therapies, and ensure that patients are able to access their treatments. LLS also supports public policy positions that accelerate progress toward cures for blood cancers, and improve the quality of life of blood cancer patients and their families.

Fundraising

LLS has five fundraising campaigns: Light The Night,

Team In Training Team In Training (TNT) is the flagship fundraising program for the Leukemia & Lymphoma Society (LLS), the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. TNT is the only endu ...

, Visionaries of the Year, Student Visionaries of the Year, and Big Climb. Light The Night is The Leukemia & Lymphoma Society's largest community initiative to build awareness of blood cancers as well as raise money for research and support of patients and their families. Participants carry illuminated lanterns of different colors. White lanterns are carried by survivors, red by supporters, and gold lanterns are carried by those walking in memory of a loved one they lost. Patients, their family, friends, and colleagues take part in the annual evening walk which is at a leisurely pace, ensuring that all participants are able to enjoy the event.

References

{{DEFAULTSORT:Leukemia and Lymphoma Society Charities based in New York (state) Cancer charities in the United States Leukemia Medical and health organizations based in New York (state) Voluntary health agencies of the United States