Leukemia & Lymphoma Society

The Leukemia & Lymphoma Society
Founded 1949[1]
Type 501(c)(3) nonprofit organization
Purpose Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.[1]
Headquarters Rye Brook, New York
Coordinates Coordinates: 40°59′13″N 73°44′34″W / 40.987082°N 73.7426742°W / 40.987082; -73.7426742
Area served
United States and Canada.
President and CEO
 Louis J. DeGennaro, Ph.D.[1]
Subsidiaries The LLS of Canada,
The LLS Research Programs, Inc.,
The LLS Research Foundation[1]
Budget (2014)
$317,198,282[1]
Staff (2014)
1,439[1]
Volunteers (2014)
3,000,000[1]
Website lls.org
Formerly called
 Robert Roesler de Villiers Foundation,
Leukemia Society of America

The Leukemia & Lymphoma Society (LLS), founded in 1949, is the world's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. LLS's mission is to cure leukemia, lymphoma, Hodgkin's disease and myeloma, and to improve the quality of life of patients and their families.[2] LLS created the Information Resource Center (IRC) to provide blood cancer patients, their families and health professionals accurate, current disease information and support. IRC information specialists are social workers, nurses and health educators.

LLS has 64 chapters in the United States, as well as five chapters in Canada (Leukemia & Lymphoma Society of Canada).[1] Nationwide volunteer fundraising events and activities include Team in Training (an endurance sports training program where volunteers train to complete an endurance sports event while fundraising to support the fight against blood cancers),[3] Light The Night Walk (a community-based walk that celebrates patients battling cancer, their families and supporters),[4] and Student Series (K-12 student service learning program to raise awareness and funds to fight blood cancer).[5] Each chapter also organizes its own fundraising activities.

LLS is a 501(c)(3) charitable organization. Financial information, including Form 990s, on the organization can be found on Guidestar.[1] The Leukemia & Lymphoma Society is accredited with the Better Business Bureau, meeting all 20 standards for charitable accountability[6] and is certified by HonCode, Health on the Net Foundation.[7]

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.[8]

Research

Since its founding, The Leukemia & Lymphoma Society has provided more than 600 million dollars for research on blood cancers and has coordinated a nationwide informational clearinghouse for medical professionals, caregivers, and patients.[9] For the organization's 60th anniversary, an organizational goal to transform the lives of people with blood cancer and the healthcare landscape that patients, families and caregivers navigate was established.[10]

Advocacy

LLS also advocates 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.[11]

According to VaccineNewsDaily, the Leukemia and Lymphoma Society is urging the state of California to reconsider its standard benefit design due to the potential negative impact on specialty medication users like cancer patients. California's benefit design specifies copayment and coinsurance levels that insurance companies in the exchange will charge for services. Coinsurance requires patients to pay for a percentage of cost of the drug or service they are receiving. The Society urges California to look at New York's benefit design, which is more fairly organized for specialty medication users.[12]

Fundraising

The signature fundraising program, Team in Training (TNT), is the world's first and largest charity sports training program, raising nearly $1 billion for blood cancer research and patient support since its inception 20 years ago. Additionally, there are yearly endurance events run to benefit the Leukemia & Lymphoma Society, including the Rock ‘n’ Roll San Diego Marathon and Half Marathon, held on June 6, 2010. In previous years, Nike has sponsored a women's marathon for similarly charitable purposes.

The largest annual fund-raiser is the Light The Night Walk, a non-competitive walk held at various sites throughout the US, Canada, and Australia, raising funds for blood cancer research and patient support. Children, adults, and seniors walk carrying illuminated balloons – supporters carry red balloons, survivors and patients carry white balloons, and gold balloons are held in memory of a loved one.

Additionally each year, candidates from communities across the nation engage in a ten-week fundraising competition to earn the titles of LLS Man & Woman of the Year by raising funds for blood cancer research in honor of local children who are blood cancer survivors, the Boy and Girl of the Year. In 2009, the candidates collectively raised $910,000.[13] In 2015, Jason Fleischer of the New York City Chapter and Erin Ragsdale of the North Texas Chapter were the national winners for the MWOY campaign.

Nearly 50 LLS chapters also hold a Leukemia Cup Regatta. Sailors and local businesses raise funds for the society and then participate in a day or two on the water. In addition to the racing, each regatta holds several social functions which usually include at least one presentation by a world-class sailor. Past speakers have included Russell Coutts, Terry Hutchinson, Anna Tunnicliffe, and Gary Jobson. Jobson has been the national Honorary Chairperson for the Regatta since 1994 and was diagnosed with lymphoma in 2003. The first Leukemia Cup Regatta was held in 1988 by a group of sailors seeking to honor their friend who had lost his battle with blood cancer. Since then, it has grown to a series of events that raise over $3.2 million annually.

Geared toward a younger audience, The Dude Hates Cancer (TDHC) is an up-and-coming campaign currently taking place in Philadelphia and Buffalo, New York. The campaign draws its name from the lead character in the Coen Bros. film The Big Lebowski, and culminates in a bowling tournament. As of 2012, TDHC had raised over $295,000 for LLS since its inception in 2006.

In 2008, FarmHouse Fraternity adopted LLS as its International Philanthropy.

References

  1. 1 2 3 4 5 6 7 8 9 "Form 990: Return of Organization Exempt from Income Tax" (PDF). Leukemia & Lymphoma Society. Guidestar. June 30, 2014. Retrieved October 19, 2015.
  2. ↑ The Leukemia & Lymphoma Society Annual Report (2008)
  3. ↑ Team In Training, First Time Here
  4. ↑ What is Light The Night
  5. ↑ "Student Series". www.studentseries.org. Retrieved 2016-04-30.
  6. ↑ The Better Business Bureau Wise Giving Report for The Leukemia & Lymphoma Society
  7. ↑ HonCode, Health on the Net Certification
  8. ↑ The Leukemia & Lymphoma Society, Our History
  9. ↑ The Leukemia & Lymphoma Society, About Us
  10. ↑ The Leukemia & Lymphoma Society, 60 Years of Innovations
  11. ↑ About LLS Advocacy
  12. ↑ Cohen, Bryan (June 10, 2013). "Leukemia & Lymphoma Society: California must reconsider its insurance standard benefit design". VaccineNewsDaily. Retrieved 12 June 2013.
  13. ↑ http://www.mwoy.org/nca/
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