THE SOCIETY
 The Leukemia & Lymphoma Society
 The Connecticut Chapter
 Leukemia, Lymphoma,
Hodgkin’s Disease & Myeloma
About The Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society is the world’s largest voluntary health organization dedicated to
funding blood cancer research, education and patient services. The Society was founded as The
DeVilliers Society in 1949 by parents who had lost their only son to leukemia and recognized the need
for the creation of a separate organization dedicated to finding cures for the disease through research.
Since its founding in 1949, the Society has provided more than $486 million for research specifically
targeting blood-related cancers. The Society is dedicated to being one of the top-rated voluntary
health agencies in terms of dollars that directly fund our mission. 75% of total expenses included in
the Society's audited annual report are spent on this mission.
Although the Society originated in New York City, its home office is now located in White Plains, New
York, with 63 chapters throughout the country.
OUR MISSION
THE LEUKEMIA & LYMPHOMA SOCIETY’S MISSION IS TO CURE LEUKEMIA,
LYMPHOMA, HODGKIN’S DISEASE AND MYELOMA AND TO IMPROVE THE
QUALITY OF LIFE OF PATIENTS AND THEIR FAMILIES.
About The Connecticut Chapter
The Connecticut Chapter serves all of Connecticut. Educational materials are sent free of charge to
individuals and health care professionals in hospitals, agencies and libraries. The Society has five
priority programs to help us reach our goal of finding a cure for and elimination of leukemia and its
allied cancers.
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The Research Program supports researchers with grants and fellowships for research projects
throughout the world.
The Patient Aid Program provides free financial and emotional support to those affected by
leukemia or other blood-related cancers.
The Public Education Program provides free materials and programs to the public.
The Community Service Program works with the community service agencies to meet patient
needs and conduct life-saving Bone Marrow Donor Drives.
The Professional Education Program addresses the continuing education needs of the health care
professional.
The Connecticut Chapter area is fortunate to have a significant number of researches located right
here in our community. Here in Connecticut, the money raised through fundraising events is currently
supporting 5 researchers.
About Leukemia, Lymphoma, Hodgkin’s Disease and Myeloma
Leukemia, lymphoma, Hodgkin’s disease and myeloma are cancers that originate in the bone marrow
and lymphatic tissues. These cancers have two features in common: cells that are abnormal because
of altered DNA and cells that have accumulated in excessive amounts.
Leukemia, lymphoma, Hodgkin’s disease and myeloma are considered to be related cancers because
they involve the uncontrolled growth of cells with related functions and origins. These diseases result
from an acquired genetic injury to the DNA of a single cell, which becomes abnormal (malignant) and
multiplies continuously. The accumulation of malignant cells interferes with the body’s production of
healthy blood cells, making the body unable to protect itself against infection.
Hodgkin’s disease, a specialized form of lymphoma, represents about 8% of all lymphomas
diagnosed each year. Hodgkin’s disease has characteristics that distinguish it from all other cancers
of the lymphatic system, including: 1) the presence of an abnormal cell called the Reed-Sternberg cell
(a large malignant cell found in the Hodgkin’s disease tissues); 2) incidence rates higher in
adolescents and young adults; and 3) a cure rate higher than 80%.
Research Specifics
Since its founding in 1949, The Society has funded research that has led to advances and treatments
in fighting leukemia, lymphoma, Hodgkin’s disease and myeloma. The results of these breakthroughs
can be measured in the increase in the number of lives that have been saved. Since its founding in
1949, The Society has provided more than $424 million for research specifically targeting
blood-related cancers, and that funding continues.
Research supported by the Society has produced tremendous breakthroughs for many patients with
leukemia and related cancers. Thirty years ago, there was no effective treatment for leukemia. In
1960, the survival rate for children with the most common form of leukemia was an appalling 4%.
Chemotherapy, now an effective treatment for patients with most forms of cancer, was pioneered by
leukemia research. Thanks to research supported by programs such as TEAM IN TRAINING, the
five-year survival rate for children diagnosed with acute lymphocytic leukemia has increased to 81%.
Patients with leukemia, lymphoma, Hodgkin’s disease and myeloma, have an overall survival rate of
over 40%.
2001 brought one of the most remarkable successes in our 50-plus year history. The U.S. Food and
Drug Administration approved Gleevec, the first drug that directly turns off the signal of a protein
known to cause cancer. Gleevec was developed by Brian Druker, M.D., with research that was
funded by the Society. An astounding new oral anti-cancer therapy, Gleevec is enabling patients with
chronic myelogenous leukemia (CML) to live normal lives. We are very encouraged about this
progress in gene therapy.
New research funded by The Leukemia & Lymphoma Society found that Millennium Pharmaceutical’s
cancer drug Velcade recently approved by the FDA for multiple myeloma, blocks growth and kills
mantle cell lymphoma (MCL) cells in the laboratory setting. “Our research found that Velcade
destroys mantle cell lymphocytes by blocking a key factor responsible for regulating cellular growth,”
says the study’s lead investigator, Richard J. Ford, M.D., Ph.D., of the University of Texas M.D.
Anderson Cancer Center in Houston. “The findings bring hope to patients with this form of lymphoma,
which is very difficult to treat.” Dr. Ford is recipient of the Society’s Translational Research Grant.
Patient Services
The Society is committed to improving the quality of life for patients and their families through an
impressive range of emotional and practical services that give support from diagnosis through
treatment and recovery. The following is a listing of these services: Family Support Groups,
Advocacy Network, Information Resource Center (IRC), educational and professional materials, First
Connection, “Cancer: Keys to Survivorship,” Patient Financial Aid and the Society’s website,
www.lls.org/ct. For more information on Patient Services in the Connecticut Chapter, please contact
our Patient Services managers, Phyllis Osterman or Jennifer McGarry:
Phyllis Osterman
(203) 427-2075
phyllis.osterman@lls.org
Jennifer McGarry
(203) 427-2046
jen.mcgarry@lls.org
Advocacy
Connecticut Advocacy Success
House Bill No. 5114
AN ACT CONCERNING DEVELOPMENTAL NEEDS OF CHILDREN AND YOUTH WITH CANCER.
On May 2, 2006 the Connecticut Senate unanimously passed legislation that requires individual and
group health insurance policies to provide coverage for neuropsychological testing of children
diagnosed with cancer after December 31, 1999. The mandate applies to plans delivered, issued for
delivery, amended, renewed, or continued in the state on and after October 1, 2006. The bill also
requires the social services commissioner to amend the state's Medicaid and State Children's Health
Insurance Program plans to provide this coverage under HUSKY A and B. Under the bill, insurers and
the HUSKY plans must cover tests a licensed physician orders to assess the extent chemotherapy or
radiation treatment has caused the child to have cognitive or developmental delays. They may not
require prior authorization for the tests. This is a vitally important need for childhood cancer survivors
and is increasingly stressed by pediatric oncologists. Society volunteers and staff were driving forces
behind this achievement and because of their efforts more childhood cancer survivors will be able to
assess and deal with the effects of their treatment.