An Overview

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

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.

Our Mission

Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life

for patients and their families.

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

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

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%

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

Our Organization

Research Programs

Community Services

Public Policy

Professional Education

Patient Services

Volunteers

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

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

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

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

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

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

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

Co-Pay Assistance Program

(877) 557-2672 www.LLS.org/copay

Patient Financial

Aid

How We Can Help

Patient and Family Support Programs

FamilySupport Groups

Information Resource Center

Patti Robinson Kaufmann First

Connection Program

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

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

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

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

Research Works

88%

Ped.

ALL

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

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.

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

• 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

• 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

• 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

Contact Information

The Leukemia & Lymphoma Society, New York City Chapter475 Park Avenue South, 8th FloorNew York, NY 10016Tel. (212) 376-5140Fax (212) 376-7095Website: www.lls.orgInformation Resource Center (IRC): 800-955-4572

Sasha Harry, MPA Meg Harrison, MACommunity Outreach Manager Patient Services Manager

Laura Ortiz-Ravick, MA Inez LendezPatient Outreach Coordinator Patient Services

Coordinator Hispanic & Latino Communities