From Queens Library's expert-led panel, Cancer Awareness: What You Need to Know, featuring professionals from New York Hospital Queens, North Shore LIJ, the American Cancer Society, and the Leukemia and Lymphoma Society

1. An Overview

2. Our History
• The Leukemia & Lymphoma Society was
born out of a family’s grief following the
death of their 16-year-old son from leukemia
in 1944
• In 1949, the de Villiers family started a
fundraising and education organization in
their son’s name
• Their goal: to fund the best leukemia research
being done anywhere in the world

3. Blood Cancers
More than 1 million North Americans are fighting blood cancers, the third
leading cause of cancer deaths.
Early detection is rare for blood cancers, and there are no measures that can
be taken to prevent the onset of these diseases.
Approximately every four minutes someone in North America is diagnosed
with a blood cancer; every 10 minutes someone dies.

4. Our Mission
Cure leukemia, lymphoma, Hodgkin’s disease
and myeloma, and improve the quality of life
for patients and their families.

5. Incidence
Leukemia
• Leukemia is the most common cancer in children less than 20 years old
• Roughly 260,000 Americans have leukemia, with an estimated 43,050 new
cases this year
• The leukemia death rate for children 0-14 years old in the United States
has declined 76% over the past 30 years

6. Incidence
Myeloma
• About 70,000 Americans are living with myeloma
• The median age of diagnosis is 70; myeloma rarely occurs in people under
age 45
• Incidence of myeloma in black men and women was 105 percent greater
than the incidence in whites

7. Incidence
Lymphoma
• More than 628,415 Americans have lymphoma, contributing to 54% of all
blood cancers
• Non-Hodgkin lymphoma is the seventh most common cancer in the U.S.,
and its age-adjusted incidence rose by nearly 82 percent from 1975 to
2007
• Hodgkin lymphoma has a higher incidence rate in adolescents and young
adults, and cure rates are more than 96.2%

8. How We Do It
• 61 chapters across North America
• 2.2 million social network contacts
• 2.6 million email subscribers
• Over 10 million volunteers and donors
• “Best in Class” fundraising: Team In Training; Light The Night Walk; School
& Youth programs; Man & Woman of the Year

9. Our Organization
Patient
Services
Research Professional
Programs Education
Public Policy Volunteers
Community
Services

10. Education Services
The Information Resource Center
• Toll-free call center staffed by
master’s level oncology nurses,
social workers, health educators
• Accurate, current treatment
and coping information, and referrals
to resources
• Clinical trials search service tailored
to individual patients
• Translations in more than 165 languages
• Support can be reached at (800) 955-4572 Monday through Friday from
9:00 am to 6:00 pm or via e-mail at infocenter@lls.org
• 69,777 inquiries in 2011

11. Education Services
Online Engagement
• Our website www.lls.org serves a wide variety of education and
information needs
• Provides current information regarding disease specific updates and local
chapter education, support, and event activities
• 5.8 million visits online in 2011, with more than 7.5 million page views
• 208,822 subscribers to our disease specific eNewsletters, which are issued
on a monthly basis

12. Education Services
Free Materials
• An extensive catalog of education materials is offered free-of-charge to
patients and healthcare professionals
• Each year, LLS distributes booklets, brochures, fact sheets, education
program transcripts and DVDs through the Information Resource Center
and local LLS chapters
• 1,061,018 printed booklets, brochures, fact sheets, education program
transcripts and DVDs distributed in 2011

13. Back To School
Pediatric Program
• Helps children transition from active treatment
back to school
• Increases communication among healthcare
professionals, parents, patients and school
personnel
Professional Education Program
• Staying Connected: Facilitating the Learning Experience During and After
Cancer Treatment

14. Advocacy: What We Do
• Advocate nationally and locally for legislation that will improve the quality
of life of patients and their families
• Work to ensure effective, federally-funded biomedical research
• Enhance the quality of cancer care
• Educate and mobilize volunteers to take action

15. Office Of Public Policy
• More than 55,000 advocacy volunteers in LLS Grassroots Advocates
Network nationwide. NYC recruited 431 new volunteers in FY’2011 with
over 2,000 advocates in our network locally
• Each year, supporters travel to Albany and DC to share with elected
representatives the impacts of blood cancer on millions of Americans, and
urge responsible policies that will address the threatening burdens of
these diseases

16. Legislative Priorities
State Initiatives
• Support Insurance Coverage of Oral Chemotherapy (A.6233B, Lopez/ S.3988B). Bill
was signed into law by Governor Cuomo September 2011
• Support the Clinical Trial Access and Education Fund (A.807/Gottfried)
• Support legislation to prohibit insurance companies and health maintenance
organizations (HMOs) from imposing discriminatory cost-sharing, co-payments, or
deductibles on high-priced prescription drugs used to treat chronic, debilitating or
life-threatening diseases (A.8278A Kellner/ S.5000A Duane). Bill was signed into
law by Governor Patterson in October 2010.
Federal Initiatives
• Support of $4.7 million in funding for the CDC’s blood cancer education program
• Support of $100 million to implement the NIH’s Cures Accelerate Network to
enhance and speed the discovery and development of new therapies
• Co-Sponsor the Preserving Access of Life-Saving Medications Act (S.296) to help
alleviate life-threatening drug shortage problems

17. How We Can Help
Patient and Family
Support Programs
Family Co-Pay
Support Groups Assistance
Information
Program
Resource Center (877) 557-2672
www.LLS.org/copay
Patti Robinson Patient
Kaufmann First
Connection Financial
Program Aid

18. In The Community
The Patti Robinson Kaufmann First Connection
• Links newly diagnosed patients
with a trained peer volunteer with
a similar diagnosis
• 5,094 “First Connections” in 2011
Family Support Groups
• More than 825 volunteer facilitators with oncology backgrounds run more
than 452 support groups nationwide
• Each group guided by two volunteer oncology health professionals
• 13,108 participants in 2011

19. Giving Back
Patient Financial Aid
• Stipend for up to $100 per year to help patients offset expenses for
transportation as well as drug and treatment costs not covered by
insurance
• More than $43.5 million in Fiscal Year 2011 for financial aid and co-pay
assistance.
• 37,196 patients received financial aid in 2011
Co-Pay Assistance Program
• Patients are eligible for $5,000 - $10,000 in support for co-pay or
premium assistance depending on their diagnosis
• Eligibility: patients whose household income is at or within 500 percent
above the US Federal Poverty guidelines
• 10,985 patients received LLS Co-Pay Assistance in 2011

20. Investing in Research
• LLS is the world’s largest nonprofit supporter of blood cancer research. In
fiscal year 2011, LLS invested $76.7 million in nearly 400 blood cancer
research projects around the world. LLS has invested more than $814
million in research since its inception
• LLS funds exemplary projects across the entire research continuum, from
basic laboratory science through clinical trials
• LLS establishes business alliances with biotechnology companies and
contract research organizations to help advance projects more quickly
from the laboratory to clinical trials and to patients with cancer
• LLS is working with partners to increase enrollment of patients in clinical
trials in the communities where they live

21. Results That Matter
• Since 1949, the survival rate for many blood cancer patients has doubled
or tripled, and in some cases quadrupled
• Forty years ago, a child’s chance of surviving leukemia was three percent;
today, 9 out of 10 live thanks to advances supported by LLS
• Hodgkin lymphoma patient survival rates have more than doubled to 88%
since the 1960s
• Survival rate for myeloma patients tripled in past decade

22. Research Works
88%
AL d.
Pe
L

23. Not Just Blood Cancer
• Critical treatment innovations such as radiation, chemotherapy, and stem-
cell transplantation all started with blood cancer therapies
• Nearly 50% (19 out of 39) of all cancer drugs approved by the Food &
Drug Administration during the past decade were developed for blood
cancer patients
• Five have already been approved for patients with other cancers

24. Therapies that Help Other Patients Too
• Gleevec – Used to treat patients with chronic myeloid leukemia, certain
other blood cancers, gastrointestinal stromal tumors and fibrosarcomas,
and being tested for patients with breast, nerve, brain, prostate, small cell
lung and ovarian cancers, melanoma and other diseases.
• Rituxan – Used to treats patients with follicular, diffuse large B-cell
lymphoma, and patients with other types of blood cancers. It is also
approved to treat patients with rheumatoid arthritis and is being tested
for other autoimmune diseases.
• Velcade – Used to treat myeloma and mantle cell lymphoma patients, and
being tested for patients with melanoma, kidney, lung, head-and-neck,
thyroid and prostate cancers.

25. The Program
• Team In Training® (TNT), the world’s largest sports endurance training
program, will prepare you to run or walk a full or half marathon, complete
a triathlon or a century (100-mile) bike ride. You will meet hundreds of
other like-minded NY professionals who are out to train and have a good
time; all while raising money for The Leukemia & Lymphoma Society to
support blood cancer research and patient services.
The Benefits
• A comprehensive 4-5 month training program
• Certified coaches
• Fundraising support and clinics
• Fitness, gear, injury prevention & nutrition clinics
• Free race entry
• Travel accommodations and lodging for the event weekend

26. • LLS’s Light The Night Walk gathers friends, families, and all of those
affected by blood cancer to participate in a two-to-three mile walk to
support and raise funds for blood cancer research
• Walks take place every year in almost 200 communities across the nation,
with three separate walks hosted by New York City chapter, located in
Queens, Staten Island, and Manhattan
• In 2010, NYC raised an outstanding $3.2 million dollars alone, about $45
million dollars were raised nationally. There were over 250,000
participates across the country

27. • The Pennies for Patients Program is an exciting and fun school-wide
opportunity, which runs for three week period during the months of
February and March
• During this time, students years kindergarten through twelfth grade and
their educators collect and donate spare change
• Teachers are provided with educational materials including posters,
collection containers, letters to students’ parents/guardians, and age-
appropriate videos
• Lesson plans, and additional incentives can be found at
www.schoolandyouth.org/nyc

28. • Man & Woman Of The Year is a spirited 10-week campaign to raise funds
to help find cures for blood cancers
• Candidates are nominated by their social and professional peers to
compete to raise the most money in honor of local pediatric cancer
patients, the Boy & Girl of the year
• The male and female candidates who raise the most funds during the
campaign will be given the Man & Woman of the Year award

29. Contact Information
The Leukemia & Lymphoma Society, New York City Chapter
475 Park Avenue South, 8th Floor
New York, NY 10016
Tel. (212) 376-5140
Fax (212) 376-7095
Website: www.lls.org
Information Resource Center (IRC): 800-955-4572
Sasha Harry, MPA Meg Harrison, MA
Community Outreach Manager Patient Services Manager
Laura Ortiz-Ravick, MA Inez
Lendez
Patient Outreach Coordinator Patient Services
Coordinator
Hispanic & Latino Communities