Leukemia & Lymphoma Society
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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.
| Abbreviation | LLS |
|---|---|
| Formation | 1949 |
| Founder | Rudolph and Antoinette Roesler de Villiers[1] |
| Type | Charity |
| Legal status | 501(c)(3) nonprofit organization |
| Purpose | Funding blood cancer research, patient and family support services, outreach |
| Headquarters | 3 International Drive, Suite 200, Rye Brook, NY 10573 |
| Coordinates | 41°03′01″N 73°41′16″W / 41.05017°N 73.6879°W |
Region served | United States and Canada |
| E. Anders Kolb, MD | |
| Troy Dunmire | |
| Gwen Nichols, MD | |
| JR Miller | |
| Affiliations | The LLS of Canada |
Revenue (2022) | US$443.86 million |
| Website | lls |
Formerly called | Robert Roesler de Villiers Foundation (1949-1954) Leukemia Society (1955-1965) |
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.[2] 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.[3]
History edit
Robert Roesler de Villiers Foundation (1949-1954) edit
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]
Leukemia Society (1955-1965) edit
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) edit
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) edit
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]
Research edit
Since its founding, The Leukemia & Lymphoma Society has invested more than $1.2 billion (USD) in blood cancer research, funding nearly all of today's most promising treatments.[20] As there are no means of preventing blood cancers, the LLS research agenda is focused on finding 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 edit
Acute myeloid leukemia edit
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.
Acute lymphoblastic leukemia edit
LLS currently contributes hundreds of thousands of dollars per year[needs update] 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]
Patient support edit
The Leukemia & Lymphoma Society is a source of blood cancer information, education and support for patients, survivors, families and healthcare professionals.
In 1997, LLS created the Information Resource Center (IRC) to provide blood cancer patients, their families and health professionals with accurate, current disease information, resources and support.[5][23] LLS Blood Cancer Information Specialists are master's level oncology social workers, nurses and health educators. An Information Specialist can assist patients through cancer treatment, financial and social challenges and give accurate, up-to-date disease, treatment and support information.
As a community-based voluntary health organization, LLS has regional and local chapters throughout the United States and Canada to support blood cancer patients in every community.[24]
Advocacy edit
The Leukemia & Lymphoma Society's Office of Public Policy pursues LLS's mission through advocacy aimed at governmental decision-makers.
Through LLS's nationwide grassroots network of more than 100,000 volunteers, the organization advocates for policies at the state and federal level to remove barriers to care for blood cancer patients. These efforts include helping to increase federal research funds, speed the review and approval process of new therapies, and ensure patients are able to access their treatments.
LLS also advocates for public policy positions that accelerate progress toward cures for leukemia, Hodgkin and non-Hodgkin lymphoma and myeloma, and to improve the quality of life of those with blood cancer, their friends and families.[25]
Fundraising edit
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. It is held in over 100 communities in North America each fall.[26] 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.[27] 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.[28]
References edit
- ^ . Leukemia & Lymphoma Society. Archived from the original on 8 October 2018. Retrieved 8 October 2018.
- ^ "Who We Are | Leukemia and Lymphoma Society". www.lls.org. Retrieved 2023-09-05.
- ^ a b "Charity Navigator - Rating for The Leukemia & Lymphoma Society". www.charitynavigator.org. Retrieved 2023-08-30.
- ^ "Mrs. Rudolph de Villiers, 77; Founded Leukemia Society". The New York Times. 1971-08-06. ISSN 0362-4331. Retrieved 2023-09-05.
- ^ a b c d 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.
- ^ a b "NLM History of Medicine Division Finding Aids". findingaids.nlm.nih.gov. Retrieved 2023-09-05.
- ^ "New Castle Tribune 14 November 1957 — The NYS Historic Newspapers". nyshistoricnewspapers.org. Retrieved 2023-09-05.
- ^ a b Annual Report, Fiscal Year '1968-69, Leukemia Society of America, Inc.
- ^ "Our History". tlls.org. 2018-03-13. Retrieved 2023-09-05.
- ^ 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.
- ^ "The Suffolk County News 25 August 2005 — The NYS Historic Newspapers". nyshistoricnewspapers.org. Retrieved 2023-09-05.
- ^ "Leukemia : official journal of the Leukemia Society of America, Leukemia Research Fund, U.K". vivo.health.unm.edu. Retrieved 2023-09-05.
- ^ Annual Report, Fiscal Year '1990-91, Leukemia Society of America, Inc.
- ^ "Who we are". www.bloodcancers.ca. 2023-08-24. Retrieved 2023-08-30.
- ^ "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.
- ^ "New Study Shows Most Blood Cancer Patients Benefit from an Additional COVID-19 Vaccine Dose". Curetoday. 2021-09-15. Retrieved 2023-09-05.
- ^ "Breakthrough COVID-19 Infection in 10% of Patients With Blood Cancer, LLS Data Show". AJMC. 2022-12-12. Retrieved 2023-09-05.
- ^ "These 4 nonprofits led the charge on voters rights, artisan wages, and more". Fast Company. 2022-10-25.
- ^ "The Leukemia & Lymphoma Society Welcomes Five Members to Board of Directors". Yahoo Finance. 2023-07-03. Retrieved 2023-08-30.
- ^ . Archived from the original on 2018-02-08. Retrieved 2018-02-28.
- ^ Beat AML
- ^ a b "The Leukemia & Lymphoma Society awards grant to Savoldo for immunotherapy research" (Press release). University of North Carolina at Chapel Hill School of Medicine. 21 November 2017. Retrieved 11 October 2018.
- ^ Colditz, Graham A. (2007). Encyclopedia of Cancer and Society. p. 963.
- ^ "Leukemia and Lymphoma Society to host event at Bowring Park". www.thetelegram.com. Retrieved 2019-11-08.
- ^ "The Leukemia & Lymphoma Society of Canada / Société de leucémie & lymphome du Canada". CanadaHelps - Donate to any charity in Canada. Retrieved 2019-11-08.
- ^ Writer, Jacqueline Reynolds/Aspen Daily News Staff (2022-02-09). "'Light the Night with Love' returns to Carbondale". Aspen Daily News. Retrieved 2023-10-31.
- ^ Paulson, Dave. "Charles Esten leads 'Light the Night' walk for LLS". The Tennessean. Retrieved 2023-10-31.
- ^ "Prospective Friends & Family Teams | Light The Night | Leukemia & Lymphoma Society". www.lightthenight.org. Retrieved 2023-10-31.