Leukemia & Lymphoma Society

Last updated
The Leukemia & Lymphoma Society, Inc.
AbbreviationLLS
Formation1949;75 years ago (1949)
FounderRudolph and Antoinette Roesler de Villiers [1]
Type Charity
Legal status 501(c)(3)
nonprofit organization
PurposeFunding blood cancer research, patient and family support services, outreach
Headquarters3 International Drive, Suite 200, Rye Brook, NY 10573
Coordinates 41°03′01″N73°41′16″W / 41.05017°N 73.6879°W / 41.05017; -73.6879
Region served
United States and Canada
E. Anders Kolb, MD
COO
Troy Dunmire
CMO
Gwen Nichols, MD
CFO
JR Miller
AffiliationsThe LLS of Canada
Revenue (2022)
Increase2.svgUS$443.86 million
Website lls.org
Formerly called
Robert Roesler de Villiers Foundation (1949–1954)

Leukemia Society (1955–1965)

Leukemia Society of America (1966–1999)

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. LLS funds blood cancer research on cures for leukemia, lymphoma, Hodgkin's disease, and myeloma. It provides free information and support services, and it advocates for blood cancer patients and their families seeking access to quality and affordable care.

Contents

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 $1.7 billion (USD) to blood cancer research. [2]

The Leukemia & Lymphoma Society had a four-star rating with Charity Navigator in 2023, scoring 97%. [3]

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. [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, Ludwik Gross was selected for the first prize and a grant to continue research. [5] [6]

Leukemia Society (1955–1965)

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.

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. [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 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. [14]

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 has a Four-Star rating with Charity Navigator. [3]

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

Research

Since its founding, The Leukemia & Lymphoma Society has contributed more than $1.6 billion (USD) to blood cancer research. [20] 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. [21]

Acute leukemia

Acute myeloid leukemia

Acute myeloid leukemia (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. [22] [23]

LLS is leading the Beat AML Master Clinical Trial and is the first nonprofit cancer organization to sponsor a cancer clinical trial. [24] 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 (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. [23]

Acute lymphoblastic leukemia

LLS currently contributes towards research into immunotherapies targeting acute lymphoblastic leukemia (ALL). As part of a wider funding effort including over a dozen other cancer immunotherapy projects, LLS supports more effective and targeted treatments utilizing the body's own internal attack mechanisms. [25] In late 2017, LLS awarded researchers at UNC School of Medicine a $600,000 grant to support clinical research on chimeric antigen receptor (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—by halting the activity of infused T cells, in the event a patient experiences severe treatment toxicity. [26]

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. [27]

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. [28] 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. [29]

Advocacy

The Leukemia & Lymphoma Society's Office of Public Policy advances LLS's mission through advocacy aimed at governmental decision-makers. [30] Through LLS's nationwide grassroots network of more than 30,000 volunteers, LLS advocates for blood cancer patients at the state and federal level. [31] 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. [32]

Fundraising

LLS has five fundraising campaigns: Light The Night, [33] Team In Training, [34] Visionaries of the Year, [35] [36] Student Visionaries of the Year, [37] and Big Climb. [38] 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. [39] [40] 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. [41] 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. [42]

Further reading

Related Research Articles

<span class="mw-page-title-main">Leukemia</span> Blood cancers forming in the bone marrow

Leukemia is a group of blood cancers that usually begin in the bone marrow and result in high numbers of abnormal blood cells. These blood cells are not fully developed and are called blasts or leukemia cells. Symptoms may include bleeding and bruising, bone pain, fatigue, fever, and an increased risk of infections. These symptoms occur due to a lack of normal blood cells. Diagnosis is typically made by blood tests or bone marrow biopsy.

<span class="mw-page-title-main">Lymphoma</span> Hematologic cancer that affects lymphocytes

Lymphoma is a group of blood and lymph tumors that develop from lymphocytes. The name typically refers to just the cancerous versions rather than all such tumours. Signs and symptoms may include enlarged lymph nodes, fever, drenching sweats, unintended weight loss, itching, and constantly feeling tired. The enlarged lymph nodes are usually painless. The sweats are most common at night.

<span class="mw-page-title-main">Chronic lymphocytic leukemia</span> Medical condition

Chronic lymphocytic leukemia (CLL) is a type of cancer in which the bone marrow makes too many lymphocytes. Early on, there are typically no symptoms. Later, non-painful lymph node swelling, feeling tired, fever, night sweats, or weight loss for no clear reason may occur. Enlargement of the spleen and low red blood cells (anemia) may also occur. It typically worsens gradually over years.

<span class="mw-page-title-main">Tumors of the hematopoietic and lymphoid tissues</span> Tumors that affect the blood, bone marrow, lymph, and lymphatic system

Tumors of the hematopoietic and lymphoid tissues or tumours of the haematopoietic and lymphoid tissues are tumors that affect the blood, bone marrow, lymph, and lymphatic system. Because these tissues are all intimately connected through both the circulatory system and the immune system, a disease affecting one will often affect the others as well, making aplasia, myeloproliferation and lymphoproliferation closely related and often overlapping problems. While uncommon in solid tumors, chromosomal translocations are a common cause of these diseases. This commonly leads to a different approach in diagnosis and treatment of hematological malignancies. Hematological malignancies are malignant neoplasms ("cancer"), and they are generally treated by specialists in hematology and/or oncology. In some centers "hematology/oncology" is a single subspecialty of internal medicine while in others they are considered separate divisions. Not all hematological disorders are malignant ("cancerous"); these other blood conditions may also be managed by a hematologist.

<span class="mw-page-title-main">Roswell Park Comprehensive Cancer Center</span> Hospital in New York, United States of America

Roswell Park Comprehensive Cancer Center is a cancer research and treatment center located in Buffalo, New York. Founded by surgeon Roswell Park in 1898, the center was the first in the United States to specifically focus on cancer research. The center is usually called Roswell Park in short. The center, which conducts clinical research on cancer as well as the development new drugs, provides advanced treatment for all forms of adult and pediatric cancer, and serves as a member of the National Comprehensive Cancer Network. Roswell Park Comprehensive Cancer Center is as of 2019, the only upstate New York facility to hold the National Cancer Institute designation of "comprehensive cancer center".

<span class="mw-page-title-main">Cancer immunotherapy</span> Artificial stimulation of the immune system to treat cancer

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 fundamental research of cancer immunology (immuno-oncology) and a growing subspecialty of oncology.

<span class="mw-page-title-main">Acute myeloid leukemia</span> Cancer of the myeloid line of blood cells

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 normal blood cell production. Symptoms may include feeling tired, shortness of breath, easy bruising and bleeding, and increased risk of infection. Occasionally, spread may occur to the brain, skin, or gums. As an acute leukemia, AML progresses rapidly, and is typically fatal within weeks or months if left untreated.

<span class="mw-page-title-main">Tipifarnib</span> Chemical compound

Tipifarnib is a farnesyltransferase inhibitor. Farnesyltransferase inhibitors block the activity of the farnesyltransferase enzyme by inhibiting prenylation of the CAAX tail motif, which ultimately prevents Ras from binding to the membrane, rendering it inactive.

<span class="mw-page-title-main">CD135</span> Protein-coding gene in the species Homo sapiens

Cluster of differentiation antigen 135 (CD135) also known as fms like tyrosine kinase 3, receptor-type tyrosine-protein kinase FLT3, or fetal liver kinase-2 (Flk2) is a protein that in humans is encoded by the FLT3 gene. FLT3 is a cytokine receptor which belongs to the receptor tyrosine kinase class III. CD135 is the receptor for the cytokine Flt3 ligand (FLT3L).

<span class="mw-page-title-main">Mantle cell lymphoma</span> Type of blood cancer

Mantle cell lymphoma (MCL) is a type of non-Hodgkin's lymphoma, comprising about 6% of cases. It is named for the mantle zone of the lymph nodes where it develops. The term 'mantle cell lymphoma' was first adopted by Raffeld and Jaffe in 1991.

Immunotransplant is a maneuver used to make vaccines more powerful. It refers to the process of infusing vaccine-primed T lymphocytes into lymphodepleted recipients for the purpose of enhancing the proliferation and function of those T cells and increasing immune protection induced by that vaccine.

<span class="mw-page-title-main">Brian Druker</span> American physician-scientist

Brian J. Druker is a physician-scientist at Oregon Health & Science University (OHSU), in Portland, Oregon. He is the director of OHSU's Knight Cancer Institute, JELD-WEN Chair of Leukemia Research, Associate Dean for Oncology in the OHSU School of Medicine, and professor of medicine.

<span class="mw-page-title-main">Childhood leukemia</span> Medical condition

Childhood leukemia is leukemia that occurs in a child and is a type of childhood cancer. Childhood leukemia is the most common childhood cancer, accounting for 29% of cancers in children aged 0–14 in 2018. There are multiple forms of leukemia that occur in children, the most common being acute lymphoblastic leukemia (ALL) followed by acute myeloid leukemia (AML). Survival rates vary depending on the type of leukemia, but may be as high as 90% in ALL.

<span class="mw-page-title-main">Tower Cancer Research Foundation</span>

Tower Cancer Research Foundation (TCRF) is a 501(c)(3) non-profit organization dedicated to clinical research, patient support and community education. It was established in 1996 in Beverly Hills, California.

Kite Pharma is an American biotechnology company that develops cancer immunotherapy products, with a primary focus on genetically engineered autologous CAR T cell therapy, a cell-based therapy which relies on chimeric antigen receptors and T cells. Founded in 2009, and based in Santa Monica, California, it was acquired by Gilead Sciences in 2017.

<span class="mw-page-title-main">Team In Training</span>

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 endurance sports training program where volunteers train to complete a marathon, half marathon, cycle event, triathlon or hike adventure, while fundraising to support the fight against blood cancers.

David G. Maloney is an oncologist and researcher at Fred Hutchinson Cancer Research Center and the University of Washington who specializes in developing targeted immunotherapies for the treatment of blood cancers.

Camidanlumab tesirine is an antibody-drug conjugate (ADC) composed of a human antibody that binds to the protein CD25, conjugated to a pyrrolobenzodiazepine dimer toxin. The experimental drug, developed by ADC Therapeutics is being tested in clinical trials for the treatment of B-cell Hodgkin's lymphoma (HL) and non-Hodgkin lymphoma (NHL), and for the treatment of B-cell acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML).

GEMoaB is a biopharmaceutical company based in Dresden/Germany. The company has a broad pipeline of next generation immunotherapy product candidates for the treatment of advanced blood cancers and solid tumours in pre-clinical and clinical development. The company was founded in 2011 by the two university professors Gerhard Ehninger and Michael Bachmann. It was acquired by the new company AvenCell Therapeutics in 2021.

<span class="mw-page-title-main">Bisantrene</span> Chemical compound

Bisantrene is an anthracenyl bishydrazone with anthracycline-like antineoplastic activity and an antimetabolite. Bisantrene intercalates with and disrupts the configuration of DNA, resulting in DNA single-strand breaks, DNA-protein crosslinking, and inhibition of DNA replication. This agent is similar to doxorubicin in chemotherapeutic activity, but unlike anthracyclines like doxorubicin, it exhibits little cardiotoxicity.

References

  1. ↑ "Our history". Leukemia & Lymphoma Society. Archived from the original on 8 October 2018. Retrieved 8 October 2018.
  2. ↑ "Who We Are | Leukemia and Lymphoma Society". www.lls.org. Retrieved 2023-09-05.
  3. 1 2 "Charity Navigator - Rating for The Leukemia & Lymphoma Society". www.charitynavigator.org. Retrieved 2023-08-30.
  4. ↑ "Mrs. Rudolph de Villiers, 77; Founded Leukemia Society". The New York Times. 1971-08-06. ISSN   0362-4331 . Retrieved 2023-09-05.
  5. 1 2 Krueger, Gretchen (2008). Hope and suffering: children, cancer, and the paradox of experimental medicine. Baltimore: Johns Hopkins university press. ISBN   978-0-8018-8831-1.
  6. 1 2 "NLM History of Medicine Division Finding Aids". findingaids.nlm.nih.gov. Retrieved 2023-09-05.
  7. ↑ "New Castle Tribune 14 November 1957 — The NYS Historic Newspapers". nyshistoricnewspapers.org. Retrieved 2023-09-05.
  8. 1 2 Annual Report, Fiscal Year 1968-69, Leukemia Society of America, Inc.
  9. ↑ "Our History". tlls.org. 2018-03-13. Retrieved 2023-09-05.
  10. ↑ Dameshek, W. (1970). "The deVilliers award of the Leukemia Society of America Inc. to George H. Hitchings, Ph.D". Bibliotheca Haematologica (36): XXI–XXII. ISSN   0067-7957. PMID   4950964.
  11. ↑ "The Suffolk County News 25 August 2005 — The NYS Historic Newspapers". nyshistoricnewspapers.org. Retrieved 2023-09-05.
  12. ↑ "Leukemia : official journal of the Leukemia Society of America, Leukemia Research Fund, U.K". vivo.health.unm.edu. Retrieved 2023-09-05.
  13. ↑ Annual Report, Fiscal Year '1990-91, Leukemia Society of America, Inc.
  14. ↑ "Who we are". www.bloodcancers.ca. 2023-08-24. Retrieved 2023-08-30.
  15. ↑ "Louis J. DeGennaro, PhD, Named President and Chief Executive Officer of The Leukemia & Lymphoma Society - The ASCO Post". ascopost.com. October 15, 2014. Retrieved 2023-08-30.
  16. ↑ "New Study Shows Most Blood Cancer Patients Benefit from an Additional COVID-19 Vaccine Dose". Curetoday. 2021-09-15. Retrieved 2023-09-05.
  17. ↑ "Breakthrough COVID-19 Infection in 10% of Patients With Blood Cancer, LLS Data Show". AJMC. 2022-12-12. Retrieved 2023-09-05.
  18. ↑ "These 4 nonprofits led the charge on voters rights, artisan wages, and more". Fast Company. 2022-10-25.
  19. ↑ "The Leukemia & Lymphoma Society Welcomes Five Members to Board of Directors". Yahoo Finance. 2023-07-03. Retrieved 2023-08-30.
  20. ↑ "Who We Are | Leukemia and Lymphoma Society". www.lls.org. Retrieved 2023-09-05.
  21. ↑ "$17 Million To Boost Leukemia & Lymphoma Research". The NonProfit Times. Retrieved 2023-11-17.
  22. ↑ "LLS Launches Groundbreaking Precision Medicine Approach to Treat AML | Leukemia and Lymphoma Society". www.lls.org. Retrieved 2023-09-05.
  23. 1 2 "LLS Starts Beat AML Master Trial". The Cancer Letter. 2016-10-21. Retrieved 2023-09-05.
  24. ↑ "Beat AML Utilizes Innovative Master Trial Configuration". www.clinicalleader.com. Retrieved 2023-09-05.
  25. ↑ AM, Jo Cavallo Posted: 9/18/2023 11:34:00 AM Last Updated: 9/18/2023 10:49:20. "Cancer Moonshot Initiative Receives 240 Million Boost - The ASCO Post". ascopost.com. Retrieved 2023-11-17.{{cite web}}: CS1 maint: numeric names: authors list (link)
  26. ↑ Oleniacz, Laura (2017-11-21). "Leukemia & Lymphoma Society awards grant to Savoldo for immunotherapy research". UNC Lineberger. Retrieved 2023-11-17.
  27. ↑ Ref, Cross (2019), "Book Chapter Submission Validation Test", Book Title Submission Validation Test, Somewhere, MA: The Test Institution, pp. 87–107, retrieved 2023-11-17
  28. ↑ Colditz, Graham A. (2007). Encyclopedia of Cancer and Society. p. 963.
  29. ↑ Telegram, The. "Leukemia and Lymphoma Society to host event at Bowring Park | The Telegram". www.thetelegram.com. Retrieved 2019-11-08.
  30. ↑ "Public and Governmental Affairs Committee: A Vital Connection to Science Policy Decision Makers". JOM. 65 (4): 466–466. 2013-02-21. doi: 10.1007/s11837-013-0584-5 . ISSN   1047-4838.
  31. ↑ Society (LLS), The Leukemia & Lymphoma. "The Leukemia & Lymphoma Society's Newest Event Aims to Power Groundbreaking Research and Support for Cancer Patients". www.prnewswire.com. Retrieved 2023-11-17.
  32. ↑ "The Leukemia & Lymphoma Society of Canada / Société de leucémie & lymphome du Canada". CanadaHelps - Donate to any charity in Canada. Retrieved 2019-11-08.
  33. ↑ "LLS Light the Night walk for blood cancer". NEWS10 ABC. 2023-10-15. Retrieved 2024-01-11.
  34. ↑ elessard (2023-09-01). "Meet the Endurance Athletes Racing to Beat Blood Cancer". Outside Online. Retrieved 2024-01-11.
  35. ↑ Guest (2023-06-09). "Leukemia & Lymphoma Society announces Albany 2023 Visionaries of the Year". Troy Record. Retrieved 2024-01-11.
  36. ↑ "Are You Washington, D.C.'s Next Visionary of the Year? - Washingtonian". 2023-10-23. Retrieved 2024-01-11.
  37. ↑ WASHINGTON, GOOD MORNING (2023-07-11). "Local high school students raising money to fight blood cancer; how you can too". WJLA. Retrieved 2024-01-11.
  38. ↑ Gilbert, L. B. (2023-03-13). "Firefighters climb Seattle's tallest building for cancer research". MyNorthwest.com. Retrieved 2024-01-11.
  39. ↑ "LLS Light the Night walk for blood cancer". NEWS10 ABC. 2023-10-15. Retrieved 2024-01-11.
  40. ↑ "About Light The Night | Light The Night | Leukemia & Lymphoma Society". www.lightthenight.org. Retrieved 2024-01-11.
  41. ↑ Paulson, Dave. "Charles Esten leads 'Light the Night' walk for LLS". The Tennessean. Retrieved 2023-10-31.
  42. ↑ "Prospective Friends & Family Teams | Light The Night | Leukemia & Lymphoma Society". www.lightthenight.org. Retrieved 2023-10-31.
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