Leukemia & Lymphoma Society
 | |
| 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 / 41.0501719°N 73.68790669999998°W |
Region served | United States and Canada |
| Louis J. DeGennaro, Ph.D.[2] | |
| Rob Beck[2] | |
| Danielle Gee[2] | |
| Rosemarie Loffredo[2] | |
| Subsidiaries | The LLS of Canada, The LLS Research Programs, Inc., The LLS Research Foundation |
| Affiliations | Barclays, Burlington, Olive Garden, Subaru, UFCW, Walgreens[3] |
| Website | www |
Formerly called | Robert Roesler de Villiers Foundation, Leukemia Society of America |
The Leukemia & Lymphoma Society (LLS), a 501(c)(3) charitable organization founded in 1949, is the world's largest voluntary health organization dedicated to fighting blood cancer. The LLS's mission is: cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.[4] LLS funds blood cancer research around the world, provides free information and support services and is the voice for all blood cancer patients seeking access to quality, affordable, coordinated care.
LLS is headquartered in Rye Brook, New York, with 56 chapters throughout the United States and five chapters in Canada. LLS has six signature fundraising campaigns: Team In Training, the largest charitable endurance training program in the world; Light The Night, an annual series of community-based walkathons; Man & Woman of the Year, a series of annual ten-week long, community-based competitions in which adults raise funds in honour of local children who have survived blood cancer; Students of the Year, an annual series of seven-week long, community-based fundraising competitions amongst high school students; Leukemia Cup Regatta, a series of fundraising sailing events held by yacht clubs across North America; and Pennies for Patients, a programme providing North American elementary and middle schools with access to STEM curricula. In addition to the main campaigns, there is LLS Lifestyle, in which groups and individuals, through their local chapters, can turn any activity or event into a vehicle for fundraising.
History
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 name of the organization was later changed to the Leukemia Society of America in the 1960s, and later to The Leukemia & Lymphoma Society in 2000 to reflect the organization's focus on all types of blood cancer.[5]
Research
Since its founding, The Leukemia & Lymphoma Society has invested more than $1.2 billion (USD) in cutting-edge blood cancer research, funding nearly all of today's most promising treatments.[6] 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
Acute myeloid leukemia
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.
LLS is leading the Beat AML Master Clinical Trial [7] 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
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.[8]
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.[8]
Patient Support
The Leukemia & Lymphoma Society is the leading source of free, highly specialized blood cancer information, education and support for patients, survivors, families and healthcare professionals. LLS helps patients navigate their cancer treatments and ensures they have access to quality, affordable and coordinated care.
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. 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.
Advocacy
The Leukemia & Lymphoma Society’s Office of Public Policy pursues LLS's mission through advocacy aimed at governmental decisionmakers.
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.
Fundraising campaigns
Through The Leukemia & Lymphoma Society fundraising campaigns, participants help support lifesaving research, patient support and education, and advocacy efforts that benefit blood cancer patients. LLS has been a pioneer in creating theme-driven fundraising campaigns.
Team In Training
The world's first and largest charity endurance sports training program, raising more than $1.5 billion for blood cancer research and patient support since its inception in 1988 and training more than 650,000 teammates.[9]
Light The Night
Light The Night is an annual series of community-level fundraising events held across the United States. Culminating in after dark walkathons, the events celebrate those who have been affected by blood cancer and commemorates those who have died.[10][11]
Light The Night events feature family-friendly attractions such as food, drinks, music, balloon art, and face painting in addition to talks,[12] memorials, and other exhibits. Opening ceremonies generally take place at sundown and are immediately followed by a mile walk. Individuals, friends, families, and sponsored teams participate in the walks by carrying lanterns, illuminated in a colour codeed fashion. Survivors and patients carry white lanterns, supporters carry red, and those who have lost loved ones carry yellow lanterns. Some walks have been concluded with fireworks displays.[11]
Benefits from Light The Night campaigns go to LLS, which in turn uses the proceeds to fund research into treatments and potential future cures for blood cancers.[10][12]
The lantern lit walks after dark are a symbolic reference to a cancer diagnosis being "one of the darkest moments in [anyone's] life" and LLS's efforts to end blood cancer "bring[ing] light to [that] darkness."[10]
Man & Woman of the Year
Influential leaders from communities across the nation engage in a ten-week fundraising competition to earn the titles of LLS Man & Woman of the Year. The candidates form teams and raise funds for blood cancer research in honor of local children who are blood cancer survivors, the Boy and Girl of the Year. Every dollar raised counts as one vote and the titles are awarded to the man and woman with the most votes at the end of 10 weeks. Top local fundraisers become eligible to win national titles.[13]
Students of the Year
High school students can participate in the Students of The Year campaign, a leadership development program and fundraising competition that benefits LLS. Every dollar raised counts as one vote. The candidates/teams who raise the most money at the end of the seven-week competition earn the title Student(s) of the Year.[14]
Leukemia Cup Regatta
Leukemia Cup Regatta is a thrilling series of sailing events that combines the joy of boating with the important task of raising money to cure cancer. At events held at yacht clubs across North America, skippers register their boats and recruit friends and colleagues to help crew and raise funds. Crew members seek donations from friends, family, co-workers and employers to sponsor their boat. More than $62 million has been raised through the Leukemia Cup Regatta series for research and patient support since its start in 1988.[15]
Student Series
Student Series is a service learning, character education, and philanthropy program where students gain the experience of helping thousands of people in their fight against blood cancers. Schools that participate in a Student Series program receive a comprehensive, experiential K-5 STEM curriculum to incorporate into their fundraising campaign. The curriculum gives K-5 students an in-depth look at LLS-funded science, covers key Common Core skills and allows students to learn how the money they raise makes an impact.[16]
LLS Lifestyle
In addition to its signature campaigns; chapters, individuals, and groups raise funds for LLS in a variety of ways. LLS Lifestyle is activity-based fundraising that encourages people to start their own fundraising events for LLS or link fundraising to a local event or activity of their choice.[17]
References
- ^ "Our history". Leukemia & Lymphoma Society. Retrieved 8 October 2018.
- ^ a b c d "Executive leadership team". The Leukemia & Lymphoma Society. Retrieved 8 October 2018.
- ^ "2017 Annual Report". Leukemia & Lymphoma Society. Retrieved 8 October 2018.
- ^ About The Leukemia & Lymphoma Society
- ^ The Leukemia & Lymphoma Society, Our History
- ^ The Leukemia & Lymphoma Society, History
- ^ [https://www.clinicalleader.com/doc/beat-aml-utilizes-innovative-master-trial-configuration-0001 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.
- ^ Petruny, Morgan (23 January 2018). "The Girl Who Sparked the Running for Charity Movement Finishes Her First 26.2". Runner's World. Hearst Communications. Retrieved 9 October 2018.
- ^ a b c "About Light The Night". The Leukemia & Lymphoma Society. Retrieved 9 October 2018.
- ^ a b "Light the Night events draw hundreds in Cleveland, Akron". WKYC 3. WKYC. 7 October 2018. Retrieved 9 October 2018.
- ^ a b Fisher, Ronald (7 October 2018). "Light the Night Walk fundraiser 'amazing'". The Tribune-Democrat. Retrieved 9 October 2018.
- ^ "About Man & Woman of The Year". The Leukemia & Lymphoma Society. Retrieved 9 October 2018.
- ^ "About Students of The Year". The Leukemia & Lymphoma Society. Retrieved 9 October 2018.
- ^ "About Leukemia Cup Regatta". The Leukemia & Lymphoma Society. Retrieved 9 October 2018.
- ^ About Student Series
- ^ "LLS Lifestyle: Your Movement to Cure Cancer". The Leukemia & Lymphoma Society. Retrieved 9 October 2018.