A d v o c a c y. A u t h e n t i c i t y. Pa s s i o n .

The National Coalition for Cancer Survivorship 2003 Annual Report

1010 Wayne Avenue, Suite 770 • Silver Spring, MD 20910 Phone | 301.650.9127 • Fax | 301.565.9670 • Toll-Free | 877.NCCS.YES www.canceradvocacynow.org • www.canceradvocacy.org • www.cancersurvivaltoolbox.org

A d v o c a c y . A u t h e n t i c i t y . Pa s s i o n .

The National Coalition for Cancer Survivorship 2003 Annual Report

© 2004 National Coalition for Cancer Survivorship NCCS is a tax-exempt 501(c)(3) organization. This publication may not be reproduced without permission. For copies of the 2003 NCCS Annual Report, please call 301.650.9127.

Advocating for quality cancer care for all Americans. The National Coalition for Cancer Survivorship (NCCS) is

the oldest survivor-led advocacy organization working on

behalf of this country’s more than nine million cancer survivors and the millions more touched by this disease.

NCCS’s mission is to advocate for quality cancer care for all Americans.

NCCS’s vision is to be the most visible and effective

advocate at the federal level for quality cancer care for all people with cancer.

Ta b l e o f C o n t e n t s Letter from the President

2

Note from the Chair

4

Our History

6

Advocacy

8

Public Policy Priorities

9

Education & Resources

10

Events & News

12

NCCS in the News

13

Ribbon of Hope® Awards Gala

16

Tribute to Dr. Paul Bunn and ASCO Leadership

16

Opportunities for Giving

18

Individuals

19

Special Events

19

Workplace Donations

19

Matching Gifts

20

Planned Giving & Other Gifts

20

Corporate Opportunities

20

Financial Highlights

22

Corporate Sponsor Policy

23

Statement of Financial Position

24

Statement of Activities & Changes in Net Assets

25

Leadership

26

Sponsors & Donors

28

From the President

L e t t e r Fro m Th e P r e s i d e n t

Ellen Stovall President & CEO

Two-time, 32-year Hodgkins Disease survivor

Annual report 2003

“We understand what it’s like to experience a cancer diagnosis from many perspectives, and we turn that experience into

responsible

and

effective advocacy.”

Dear Friends, One of the most amusing things that has happened to me in my 14 years as president and chief executive officer of NCCS occurred a few years ago in New York City. I had finished an appearance on a major morning talk show and had just returned to my hotel. While walking through the lobby, a woman loudly exclaimed to her husband “Look, there’s that cancer lady!” As a 32-year cancer survivor, I am very proud of my long association with NCCS and the work that we have done on behalf of those affected by cancer. But ‘That Cancer Lady’ seemed to imply that I was somehow a lone symbol of this cause and this group. As the oldest survivor-led organization working on behalf of people with all types of cancers and their families, NCCS prides itself on being led by more than just one survivor. People with a history of cancer, as well as family, friends and caregivers, are all considered survivors by our organization. With that broader definition in mind, EVERY board and staff member of NCCS is a cancer survivor. Further, half of our board of directors has experienced a personal diagnosis of cancer. When we claim to be the authentic voice of people living with, through and beyond cancer, we really mean it. We understand firsthand what it’s like to experience a cancer diagnosis from many perspectives, and we turn that experience into responsible, effective, evidence-based advocacy. In the pages of this Annual Report, you will not only learn about NCCS’s activities in 2003, but you also will be introduced to many of our board and staff. You will see that this organization is run by people who have felt the anguish of this disease and who have vowed to make a difference in the lives of people with cancer. And together, thanks to the generous support of people like you, I believe that we truly are making a difference by improving the quality of life of those affected by cancer. As “The Cancer Lady,” I am the one who gives this organization its public voice. But the people that you will meet in the following pages are the ones that give this organization its authenticity and, most importantly, its heart. Sincerely,

Ellen L. Stovall President & CEO 32-Year Cancer Survivor

3

From the Chair

N o t e Fro m t h e C h a i r

Dr. Catherine Harvey Chair, Board of Directors

Oncology nurse, lost grandfather to lung cancer

Annual report 2003

“These

are

not

just

people who believe in the cause — these are people who have experienced the devastating effects of this disease firsthand.”

Over 30 years ago as a young, student nurse, I learned about survivorship. My first cancer patient was only one year older than I. She was alone, at an academic medical center 150 miles from home, facing death, while I was busy planning my life. We became friends, and I developed an admiration for her that is with me today. Neither of us would have called her a survivor, but now I know she was. She faced her illness bravely, engaged with her health care team, and fought for her life. Were she diagnosed today she wouldn’t have to go it alone. She would have the support and advocacy of those who also have faced cancer. That is what NCCS is about; assuring that anyone diagnosed with cancer today will be treated with a vision to the future and to the quality of their life. As the chair of the NCCS Board of Directors, I am proud not only of the work of this organization but of the people who comprise the board and the staff. These are not just people who believe in the cause — these are people who have experienced firsthand the devastating effects of this disease. As I can attest, cancer patients in this country need a strong voice in Washington, DC, to advocate for issues that affect them — adequate insurance reimbursement and reasonable co-pays for cancer treatment services and drugs; safe, effective and timely drug approval procedures so that the most promising cancer therapies available can reach those who need it most; and effective and aggressive symptom management for all patients so that people are relieved of pain, nausea, fatigue and other such symptoms no matter what stage of their disease. The board and staff of NCCS are working every day on these issues and others that affect every survivor — patients, families and caregivers. We hope that you will enjoy meeting just a few of the NCCS family in the following pages and will understand how deeply we have been affected and impassioned by this disease. Sincerely,

Catherine D. Harvey, RN, DrPH Chair, NCCS Board of Directors

5

Our History O u r H i s t o ry

Barbara Hoffman NCCS Co-Founder

Two-time cancer survivor, author and legal advocate

Annual report 2003

“The founders of NCCS defined survivor from ‘the moment of diagnosis and for the balance of life.’ That definition is the norm for the cancer community and beyond.”

In 1986, the founders of NCCS set out to establish an organization that would change the parlance from cancer “victim” to cancer “survivor,” envisioning an organization that would deal with the full spectrum of survivorship issues. Our definition of survivor is now the norm for the cancer community and beyond. NCCS published its Imperatives for Quality Cancer Care in 1996, the first report to approach quality cancer care from the patient/survivor perspective. This report provided the impetus that led to the creation of the National Cancer Institute’s Office of Cancer Survivorship in 1996. NCCS led a nationwide grassroots campaign to make the cause, the care and the cure of cancer the nation’s top health care priority. The campaign culminated in 1998’s THE MARCH…Coming Together to Conquer CancerSM, an event that brought 250,000 supporters to the nation’s capital and a million more to events in all 50 states. Along the way, NCCS has remained an integral part of victories for cancer survivors, such as increased insurance coverage for cancer care and other important issues on behalf of people with cancer and their families.

7

Advocacy Advocacy

Bill Schmidt Chief Operating Officer

Brother of a three-year colon cancer survivor

Stacia Grosso Senior Director, Marketing & Development

Granddaughter of colon cancer survivor, lost aunt to ovarian and mother-in-law to lung cancer

“Advocacy, as defined by

Annual report 2003

NCCS, is a continuum. It

begins

with

self-

advocacy and expands out in every direction like the sunrays in our logo.”

Government Advocacy people with cancer and their families and the care

Overview

they receive in communities nationwide. In 2003,

Informed patients and educated health care

much of NCCS’s public policy work focused on

consumers are at the heart of NCCS’s agenda. From

ensuring that the Medicare Prescription Drug

NCCS’s early days as a peer-support organization,

Modernization Act (MMA) contained policies that

we have evolved into a premiere Washington-based

would strengthen the quality of cancer care for

advocacy organization with hard-earned access to the

seniors, by improving access to cutting-edge cancer

highest levels of federal policy-making. NCCS gained

therapies, enhancing the drug approval process at

this access and a “can do” reputation on Capitol Hill

the Food and Drug Administration (FDA) and

by advocating for and encouraging thoughtful and

increasing access to palliative and supportive care for

responsible policies to significantly improve the lives

cancer patients from the moment of diagnosis.

of people with cancer and their families. NCCS takes on tough issues and advocates for systemic changes in how the nation researches, regulates, finances and delivers quality cancer care for cancer survivors living in the United States. We

In 2004, NCCS will focus on: • Successful and prompt implementation of a provision in the MMA that will provide Medicare coverage for oral chemotherapy drugs;

are an authentic voice for people with cancer and

• Monitoring the impact of certain other cancer-

their families. NCCS’s staff and leadership have

specific provisions in the MMA on access to quality

experienced this disease firsthand, and we are

cancer care;

passionate in our legislative advocacy on behalf of all who have been touched by this disease.

• Creation of a more coordinated review of cancer therapies at the FDA; and

Public Policy Priorities

• Working with multiple stakeholders to provide

As the voice of survivors and caregivers in

more

Washington, DC, NCCS understands that public

supportive care services for cancer patients from the

policy decisions at the federal level directly affect

moment of diagnosis and throughout the lifespan.

aggressive

symptom

management

and

9

National Coalition for Cancer Survivorship A d v o c a c y f o r Yo u r s e l f o r S o m e o n e Yo u L o v e Education & Resources

• Cancer Survival Toolbox®

Education — and the power and skill to use what you

One of our most effective

learn — is the most important tool that a cancer

programs is the Cancer Survival

survivor can have. Our primary goal in developing

Toolbox®. Since 1998, NCCS

programs and resources is to inform and empower

has distributed, free-of-charge,

all those dealing with a cancer diagnosis. NCCS

more than 350,000 copies of the

believes that quality cancer care begins with

Toolbox to survivors, families and caregivers.

empowering cancer survivors so that they can The

actively participate in their own care.

Cancer

Survival

Toolbox

is

a

free,

comprehensive audio program designed to help cancer survivors and caregivers gain practical skills

• Cancer: Keys to Survivorship V V V V V V V

V V V

V

V

V

Since 1998, NCCS and The

to deal with the diagnosis, treatment and challenges

Leukemia & Lymphoma Society

of cancer.

(LLS) have collaborated to offer

Cancer: Keys to Survivorship, a free

program

cancer members,

friends,

that

survivors,

caregivers

and

teaches family health

professionals important skills to help live with, through and beyond cancer. NCCS and LLS host

Cancer: Keys to Survivorship programs throughout the year and across the country. In 2003, NCCS and LLS reached thousands of individuals through programs in 28 states. In addition, by making three of the Cancer: Keys to

Survivorship modules available as webcasts on the

10

NCCS developed the Cancer Survival Toolbox in conjunction with the Oncology Nursing Society and the Association of Oncology Social Work. The Toolbox covers critical skill-building topics, including communicating

with

your

doctor,

finding

information, making decisions, solving problems, negotiating and advocating for yourself. Supplemental audio programs address issues for older persons, finding ways to pay for care and caring for the caregiver. The Cancer Survival

Toolbox is available in English, Spanish and Chinese text.

Internet, NCCS reached thousands more.

In 2003, NCCS and its content partners were joined

Cancer: Keys to Survivorship is supported by an educational grant from Ortho Biotech.

by the National Association of Social Workers to begin updating all of the existing Toolbox modules

Annual report 2003

and to develop a new module, “Living Beyond

occur when survivors and people who care for them

Cancer,” released in Spring 2004.

are invited to share their experiences.

The Cancer Survival Toolbox is supported by an unrestricted educational grant from Genentech, Inc., and the Eli Lilly and Company Foundation.

In spring 2003, NCCS hosted a town hall in conjunction with the Ireland Cancer Center at University Hospitals of Cleveland/Case Western

• Essential Care

Reserve University and Hospice of the Western

Finding good, credible resources is critical when

Reserve in Cleveland, Ohio. Titled Living & Dying

dealing with a cancer diagnosis. To help individuals

Well With Cancer: A Community Conversation, this

better understand cancer’s impact on a physical,

event explored how one community sought to

emotional, social, economic and spiritual level,

improve palliative care and address end-of-life issues.

NCCS launched in 2003 the Essential Care online

Participants in the Town Hall included National

information guide.

Cancer

Essential Care features a comprehensive discussion of

cancer

treatment

and

care,

symptom

management, clinical trials and end-of-life care. The

Institute

Director

Dr.

Andrew

von

Eschenbach and author of Dying Well, Dr. Ira Byock. The Cleveland Town Hall was made possible by an unrestricted educational grant from The Robert Wood Johnson Foundation.

guide also includes links to resources on employment and insurance issues. Additional tools include an interactive resource guide and NCCS’s awardwinning CanSearchTM - First Steps tutorial.

• NCCS Town Hall An NCCS Town Hall brings a community — patients, families, health care professionals and community leaders — together. This forum offers cancer survivors and caregivers a place to exchange ideas about living the best quality of life following a diagnosis of cancer. Past NCCS Town Hall organizers describe the extraordinary dynamics that

11

News & Events News & Events

Jan Smith Donaldson Secretary, Board of Directors

Wife of melanoma survivor and daughter and sister of breast cancer survivors

Dr. Neil Schlackman Treasurer, Board of Directors

Pediatric oncologist, lost parents to cancer

“Through

Annual report 2003

news

and

events, NCCS provides myriad opportunities for survivors and advocates to gather in celebration, rememberance and hope for the future.”

NCCS’s family of websites includes www.canceradvocacy.org, www.cancersurvivaltoolbox.org and www.canceradvocacynow.org. NCCS’s main website at www.canceradvocacy.org provides a calendar of events, including annual NCCS events such as A Tribute to ASCO Leadership, the Industry Roundtable series and the Ribbon of Hope® Awards Gala. These events provide opportunities for NCCS to gather with survivors, friends, families, dignitaries, supporters and other advocates in celebration and hope for the future.

NCCS works with a variety of national news media that disseminate information on advances in cancer treatment or policies, which impact cancer survivors and their families. News includes articles in medical journals, as well as local and national newspapers.

NCCS In the News • NCCS President & CEO Ellen Stovall was quoted

• NCCS’s Advocacy Watch™ aired on The Group

in a front-page Washington Post article by Rob Stein

Room live radio broadcast (May 4, 2003). Advocacy

titled, “From Killer to Chronic Disease: Drugs

Watch is a collaborative effort of Vital Options®

Redefine Cancer for Many” (January 29, 2003). The

International and NCCS; it presents listeners with

article examined how some of the new targeted

news and information about policy issues affecting

therapies are helping people deal with certain

their ability to access quality cancer care. This

cancers more as a chronic disease rather than an

inaugural production of Advocacy Watch focused on

acute illness.

H.R. 1288/S. 1037, the Access to Cancer Therapies Act.

• NCCS’s Town Hall, Living & Dying Well with

Cancer: A Community Conversation, was profiled in

• NCCS’s Letter to the Editor appeared in The Wall

an article by Diane Solov of the Cleveland Plain

Street Journal (May 19, 2003). The letter was in

Dealer (April 24, 2003).

response to the Journal’s editorial “A Cure for Cancer Bureaucracy” (May 6, 2003) that according

13

National Coalition for Cancer Survivorship

to NCCS, “correctly praises new FDA Commissioner

OncoLink give this award to the providers of the

Dr. Mark McClellan for invigorating the agency, but

highest quality cancer information on the Internet.

[you] unfairly and inaccurately characterize the role of Oncology Division Director Dr. Richard Pazdur.

• NCCS Chief Operating Officer Bill Schmidt was

Dr. Pazdur’s leadership has been critical in

quoted in Chicago’s The Daily Herald (July 28, 2003)

reforming the Division and helping to speed the

in an article titled, “Closing the Door on Cancer

arrival of new cancer agents supported by credible

Care” by Health Editor Lorilyn Rackyl. The article

data.”

described the effect pending Medicare reform legislation in the U.S. House of Representatives and

• NCCS’s Advocacy Watch™ aired on The Group

U.S. Senate could have on cancer patients’ access to

Room weekly radio program (June 16, 2003). The

quality care.

subject of this policy update was Medicare reimbursement and H.R. 1622, the Quality Cancer

• Dr. Dean Gesme, immediate past chair of NCCS’s

Care Preservation Act.

board of directors, was featured on All Things

Considered broadcast on National Public Radio • NCCS, along with The Susan G. Komen Breast

(August 6, 2003). The radio segment, “Congress

Cancer Foundation, placed an advertisement in Roll

Weighs Funding Cuts for Cancer Drugs” addressed

Call, “the newspaper of Capitol Hill,” supporting

concerns

H.R. 1622, the Quality Cancer Care Preservation Act

reimbursement for chemotherapy services in a

(June 19, 2003).

physician’s office will affect patients’ access.

•

Cancer

survivor

and

NCCS

Manager

about

how

changes

to

Medicare

of

• NCCS President & CEO Ellen Stovall was quoted

Development & Marketing Susan Scherr is featured

in a front-page New York Times article by Robert

in a supplement to The New York Times (June 22,

Pear titled, “Cancer Drugs Face Funds Cut in a Bush

2003) titled, “Gynecologic Cancer: What Every

Plan” (August 6, 2003). The article examined the

Woman Should Know.”

effects proposed Bush Administration cuts in Medicare payments for cancer drugs will have on

• NCCS received the Editor’s Choice Award from OncoLink.com

14

(June

2003).

The

Editors

at

patients’ access to care.

Annual report 2003

• Dr. Dean Gesme, immediate past chair of NCCS’s

• NCCS, along with the National Breast Cancer

board of directors, was featured in the Des Moines

Coalition and The Leukemia & Lymphoma Society,

Register editorial, “A Risky Trade-off in Medicare”

placed an advertisement in Roll Call (October 15,

(August 14, 2003) that discusses the impact of

2003). The ad called on Congress to provide seniors

Medicare cuts on cancer patients in Iowa.

with access to all oral anti-cancer agents during the two years before any prescription drug benefit would

• Katie Couric interviewed NCCS President & CEO

take effect.

Ellen Stovall on NBC’s The Today Show regarding expanded access to cancer clinical trials

• NCCS, concerned that proposed cuts in Medicare

(September 9, 2003).

reimbursement for cancer care will affect patients’ access to treatment in communities nationwide,

• NCCS Chief Operating Officer Bill Schmidt spoke

called attention to the issue by advertising in

out on WFSU-FM 88.9 Tallahassee, FLA., Public

Congress Daily (October 16, 2003). The full-page ad

Radio’s Morning Edition about proposed changes to

featured quotes from newspaper articles and opinion

Medicare that will impact seniors with cancer

pages from across the country echoing NCCS’s

(September 9, 2003).

concern about the impact proposed cuts will have on

• NCCS, along with The Susan G. Komen Breast

seniors with cancer who rely on Medicare.

Cancer Foundation and The Leukemia & Lymphoma

• NCCS, the National Breast Cancer Coalition and

Society, placed an advertisement in Roll Call,

The Leukemia & Lymphoma Society placed an ad in

(September 15, 2003), which is read by Washington,

Roll Call (October 20, 2003). The ad called for

DC legislative staffers and policymakers, expressing

Congress to provide seniors with cancer access to all

concern over proposed Medicare cuts that will

oral anti-cancer agents during the two years before

impact patients’ access to cancer care.

any prescription drug benefit would take effect.

• NCCS was featured on the cover of Oncology

Times for a five-year review of THE MARCH… Coming Together To Conquer CancerSM

(September 25, 2003).

15

National Coalition for Cancer Survivorship

NCCS Special Events Ribbon of Hope Awards® Gala

included Bristol-Myers Squibb Oncology, the

Each year, NCCS celebrates the unique contributions

American Society of Clinical Oncology (ASCO),

of cancer survivors, advocates and supporters at its

Merck & Company, Novartis Oncology and Ropes &

annual Ribbon of Hope Awards Gala. The 2003

Gray, LLP.

black-tie event was hosted by NCCS Board Member Jan Smith Donaldson and her husband, ABC News

Tribute to Dr. Paul Bunn

Correspondent Sam Donaldson, at the Andrew W.

& ASCO Leadership

Mellon Auditorium in Washington, DC, on April 1,

NCCS was pleased to honor Dr. Paul Bunn, outgoing

2003. President George W. Bush and Mrs. Laura

president of the American Society of Clinical

Bush served as Honorary Chairs.

Oncology (ASCO), at a special event during ASCO’s annual conference in Chicago on May 31, 2003. The

NCCS was honored to present the following

evening’s theme celebrated ASCO’s and NCCS’s

individuals with its 2003 awards: Robert Bazell,

partnership on behalf of people with cancer and

NBC News’ chief health and science correspondent;

quality cancer care.

Carole Black, president and CEO of Lifetime Entertainment Services; Fran Drescher, Emmy- and

Leaders from the cancer community in attendance

Golden Globe-nominated actress and producer; and

included: Dr. Charles Balch, ASCO executive vice

Cindy Francine Hills Melancon, founder and

president & CEO; Dr. Richard Pazdur, director of

president of CONVERSATIONS! The International

oncology for the Food and Drug Administration’s

Ovarian Cancer Connection. The evening also

Center for Drug Evaluation & Review; and National

included a special performance by Matthew Zachary,

Cancer

classical pianist and brain cancer survivor.

Eschenbach. They joined ASCO physicians and

Institute

director

Dr.

Andrew

von

NCCS in honoring Dr. Bunn for his achievements in

16

The Underwriting Sponsor for the evening was

cancer research and cancer clinical trials and for his

General Motors Corporation. Other top sponsors

care of people with cancer.

Making the voices of cancer advocacy heard in the media Roll Call - June 19, 2003 Supporting H.R. 1622, the Quality Cancer Care Preservation Act

Roll Call - September 15, 2003 Expressing concern over proposed Medicare cuts that will impact patients’ access to cancer care.

Roll Call - October 20, 2003 Calling for Congress to provide seniors with cancer access to all oral anti-cancer agents during the two years before any prescription drug benefits would take effect.

17

Opportunities for giving O p p o r t u n i t i e s fo r G i v i n g

Mark Gorman Manager of Public Policy

Six-year survivor of metastatic melanoma

Elizabeth Smart Director of Programs and Publications

Daughter of five-year ovarian cancer survivor

“Our work in advocacy,

Annual report 2003

education and outreach is possible because you continue to open your heart and support our work.”

Your generous support is key to our continued work. Contributions to NCCS — as a donor, a volunteer or an advocate — allow us to better serve and advocate for cancer survivors and their families and to ultimately improve the quality of care delivered to people with cancer in this country.

Individuals, organizations, institutions and corporations support NCCS and the work we do on behalf of all people with cancer and their families. Because NCCS works collaboratively and at the national level to influence the systems that govern health care access in this country, supporters know that their gifts to NCCS help ensure that an authentic patient voice is heard at all levels of our government.

Individuals

Special Events

NCCS values the support it receives from its

Fundraising events are vital to supporting the

individual supporters. When you volunteer to be an

activities of NCCS. We would be happy to add you to

advocate, make a donation or arrange for planned

our mailing list for upcoming events.

giving, you are making an important contribution to our work at NCCS. Remember to ask a friend, family member or co-worker to support NCCS. And educate your friends and associates about cancer survivorship and the resources that are available to them or to someone that they love should a diagnosis of cancer occur.

Workplace Donations If you participate in the Combined Federal Campaign (CFC) or the United Way, please designate NCCS No. 2512 doing business as (d/b/a)

Cancer Survivors’ Coalition, and please tell your friends and co-workers to do the same. Your contribution will support the programs and

Tribute Gifts

information for people with cancer and their

Individuals may make donations to NCCS in tribute,

families, including NCCS’s advocacy on issues that

memory or in celebration of someone affected by

affect survivors’ quality of life.

cancer. Notice of the donation will be sent to the individual or family per your request.

19

National Coalition for Cancer Survivorship

Matching Gifts

Gifts Through Your Will

Many employers will match a gift you make to

A charitable bequest in your will is one of the best

NCCS. If you or your spouse are employed by a

ways to save on federal estate taxes. A bequest to

“matching gift” company, you can double or even

NCCS is fully deductible for purposes of federal

triple your gift to NCCS. Your company’s personnel

estate taxes.

office can tell you about matching gift policies and procedures. Many companies provide a form; others allow you to electronically submit your gift information.

NCCS recommends that you consult a qualified tax or legal professional. After you choose a giving option best for you, please contact NCCS to let us know your plans. NCCS is a 501(c)(3) organization. All contributions are tax deductible to

Planned Giving & Other Gifts Many people choose to support NCCS through gifts of stock, insurance, charitable remainder trusts or bequests. For more information on these options, please contact NCCS’s Development Office at 301.650.9127.

the extent permitted by law.

Corporate Opportunities Fundraising events are key to supporting the activities of NCCS. Corporate opportunities are available for all of NCCS’s events, including the Ribbon of Hope Awards® Gala, the Tribute to ASCO Leadership and other NCCS events. Please contact

Planned giving refers to benefits related to your life

NCCS’s Marketing and Development office at

insurance policy, will, securities or other financial

301.650.9127, or check www.canceradvocacy.org for

contracts. Please review the following examples:

more information on events or other corporate giving opportunities.

Life Insurance Gifts You can name NCCS as a beneficiary of your life insurance policy. You can also retain the right to change the beneficiary at a later date.

20

“I’ll Tell You How the Sun Rose ... A Ribbon at a Time.” -Emily Dickinson 2003 Ribbon of Hope® Awards Gala Committee Chairs Honorary Chairs President George W. Bush

Sponsorship Committee Co-Chairs Mr. Orlando T. Padilla Director, Public Policy Center

and Mrs. Laura Bush

General Motors Corporation

Honorary Co-Chairs

Mr. Richard L. Thompson

Her Majesty Queen Noor of Jordan

Senior Vice President,

Ms. Lilly Tartikoff

Gala Chair Mr. Thomas Gottschalk Executive Vice President,

Policy & Government Affairs Bristol-Myers Squibb Company

Benefit Committee Co-Chairs Mrs. Jan Smith Donaldson

Law & Public Policy and General Counsel

Mrs. Diana Enzi

General Motors Corporation

Mrs. Carolina Reyes

Honorary Committee Co-Chairs The Honorable Hillary Clinton The Honorable John McCain The Honorable Rosa DeLauro The Honorable Deborah Pryce

21

Financial Highlights Fi n a n c i a l H i g h l i g h t s

Lawrence Wade Manager of Marketing & Development

Lost aunt to breast cancer

Evniki Voyatzis Manager of Visual Communications

Sister-in-law of breast cancer survivor, lost aunt to metastatic paranasal cancer

Donna Doneski Manager of Communications

Daughter of prostate cancer survivor, lost uncle and three grandparents to different types of cancer

“This annual report is a

Annual report 2003

tribute to our supporters as much as it is a record of our sterwardship that every donation be put to optimum use.”

Corporate Sponsor Policy NCCS is a national 501(c)(3) advocacy organization representing cancer survivors and their families. NCCS often partners with corporations on events, programs and educational materials. The following policy was developed to help guide and more clearly define our corporate partnerships. • NCCS will not endorse in any of its materials,

to disclose their relationship with the corporate

literature or events any specific product or product

sponsor.

name. Written materials produced by NCCS may list the corporation’s name but may not, under any circumstance, provide endorsement of a specific product, treatment or protocol.

• NCCS will not, under any circumstance, accept contributions from corporations contingent on any public policy position and/or public policy activity. NCCS maintains total independence and ultimate

• NCCS will not, under any circumstance, link from

authority over its policy-making activities separate

its website to any product-specific websites.

and apart from any corporate partnership.

• All grants provided to NCCS for programs or

• NCCS reserves the right to sever any corporate

materials are unrestricted educational grants. While

partnership with, and return contributions from, an

NCCS may seek input from time to time from its

entity that participates in public policy activities that

corporate sponsors, NCCS maintains final approval

NCCS finds offensive or that are in significant

and copyright over all program and material

conflict with NCCS public policy activities and/or

development and speaker selection.

positions.

• All materials and programs developed by NCCS

• Any corporate partner wishing to reference NCCS

are the property of NCCS and must carry the NCCS

or any NCCS project, publication or position must

copyright, and as such, cannot be changed, modified

first seek the prior review and written approval of

or duplicated without prior written permission from

NCCS.

NCCS. • All speakers at NCCS programs will be required

• NCCS will not sell or release its mailing or e-mail list to its corporate partners.

23

Statement of Financial Position For the year ending December 31, 2003 Assets Current assets: Cash and cash equivalents

$

Certificates of deposit

1,259,275 60,000

Investments

333,922

Accounts receivable: Others

6,046

Employees

526

Inventory

74,863

Prepaid expenses

195,127

Total current assets Other assets: Furniture and equipment, net of accumulated depreciation of $131,888

1,929,759

138,005

Deposit

2,649 140,654

Total assets

$

2,070,413

$

41,155

Liabilities and Net Assets Current liabilities: Accounts payable

3,561

Capital lease, current portion

145,290

Deferred revenue Accrued salaries

80,241

Accrued vacation

42,094

Total current liabilities

312,341

Other liabilities: Capital lease, net of current portion

18,289 330,630

Total liabilities Net assets: Unrestricted: Board designated

475,300 713,470

Other

1,188,770

Total Unrestricted

551,013

Temporarily Restricted Total net assets

24

Total liabilities and net assets

1,739,783

$

2,070,413

Statement of Activities & Changes in Net Assets For the year ending December 31, 2003

Unrestricted Revenues: Contributions

$

Gifts in Kind Grants

639,250

Temporarily Restricted $

50,350

Total

$

689,600

188,963

—

188,963

—

635,963

635,963

—

137,933

Publications and Merchandise

137,933

Program revenue

395,000

Special events

869,138

Miscellaneous

9,460

—

9,460

14,637

—

14,637

2,254,381

686,313

2,940,694

Interest and dividend income Total revenue Net assets released from restrictions: Satisfaction of program restrictions

Expenses: Program services Cost of direct benefit to donors Management and general

395,000 869,138

992,164

(992,164)

—

3,246,545

(305,851)

2,940,694

1,840,409

1,840,409

72,393

72,393

71,041

71,041

Fundraising

447,917

447,917

Total expenses

2,431,760

2,431,760

Change in net assets before gains and losses Other gains and losses: Loss on sale of stock

814,785

(305,851)

508,934

(918)

—

(918)

Gain on sale of asset

(2088)

—

(2088)

Change in net assets

811,779

(305,851)

505,928

Net assets January 1, 2003

376,991

856,864

1,233,855

Net assets December 31, 2003

$

1,188,770

$

551,013

$

1,739,783

25

Leadership Leadership

Robert Sachs Vice Chair, Board of Directors

18-year non-Hodgkins Lymphoma survivor

“We are strengthened by our colleagues in the cancer community, the private sector, the administration and congress, and by our fellow survivors.”

Annual report 2003

2003 Board of Directors Executive Committee

Directors

Catherine D. Harvey, RN, DrPH

John H. Glick, MD

Chair

Nancy Glick

Robert Sachs

Anita F. Gottlieb, MBA, DBA

Vice Chair

Dani Grady Antonio J. Grillo-Lopez, MD

Jan Smith Donaldson Secretary

Elmer E. Huerta, MD, MPH Ada K. Jacox, PhD, RN

Neil Schlackman, MD

Craig Lustig, MPA

Treasurer

Lark McCarthy

Ellen L. Stovall President & CEO

Elizabeth McKinley, MD, MPH Orlando T. Padilla Alfred E. Smith, IV

Dean H. Gesme, Jr., MD Immediate Past Chair Barbara Hoffman

Debra K. Thaler-DeMers, RN, OCN Meg Walsh Joseph W. Waz, Jr.

Founding Chair Samuel D. Turner

NCCS Senior Staff

Policy Counsel Ellen L. Stovall President & CEO William T. Schmidt Chief Operating Officer Stacia Strouss Grosso Senior Director, Marketing & Development

27

Sponsors & Donors Sponsors & Donors

Robin Atlas Director of Grassroots Advocacy

Lost sister to leukemia and grandfather to prostate cancer

Eric Gordon Director of Information Systems

Lost aunt to cancer

Tronette Anochie Administrative Assistant

Lost aunt to breast cancer and relative to pancreatic cancer

“Your contributions to

Annual report 2003

NCCS — whether as a donor, a volunteer, or an advocate — allow us to better advocate for cancer survivors and their families.”

Platinum

Millennium Pharmaceuticals, Inc.

Bristol-Myers Squibb Oncology

National Oncology Alliance, Inc.

The Genentech Foundation

Ropes & Gray, LLP

Novartis Oncology

United Jewish Endowment Fund of the Jewish Federation of Greater Washington

Silver Eli Lilly and Company Eli Lilly and Company Foundation General Motors Corporation GlaxoSmithKline Ortho Biotech Products, L.P.

Friend Abbott Laboratories Berlex Laboratories, Inc. Cephalon, Inc. MGI Pharma, Inc. SuperGen Inc.

Bronze

The Robert Wood Johnson Foundation

American Society of Clinical Oncology

US Oncology

Amgen

Sustaining

Aventis Oncology

Antigenics Inc.

Celgene Corporation

Genta Incorporated

Genentech, Inc.

Johnson & Johnson

Genomic Health Inc.

National Cable & Telecommunications Association

Merck & Co., Inc.

Patton Boggs, LLP

Pfizer

Pharmacia Corporation

Sanofi-Synthelabo, Inc.

Revlon, Inc.

Supporting

Chair’s Circle

Astra Zeneca Pharmaceuticals Inc.

Barbour Griffith & Rogers, Inc.

Biogen Idec

Biomira, Inc.

Cancer Cured Kids, Inc.

Cellular Telecommunications & Internet Association

EMD Pharmaceuticals, Inc.

Coalition of National Cancer Cooperative Groups

Lance Armstrong Foundation

David Katz Foundation

29

National Coalition for Cancer Survivorship FedEx Corporation

CityStaff

Alfred Liggins III

Dr. Dean Gesme, Jr.

Lee Clayton

Abramson Cancer Center of the University of Pennsylvania / Dr. John Glick

Cole Raywid & Braverman, LLP

The Honorable Frederic V. Malek and Mrs. Marlene Malek

Comcast Corporation

Marilyn Matthies

Consumer Electronics Association Valerie Crane

Lark McCarthy and Michael Thomas

Glenn Creamer

Alan McGlade

Diane and Seth Davidson

David Meister

Brian Deevy

Mintz, Levin, Cohn, Ferris, Glovsky & Popeo, P.C.

Microsoft Corporation Mutual of Omaha Insurance Companies National Association of Chain Drug Stores Foundation Brian Roberts

Leo Delgado Robert Miron

Roche Laboratories Inc. Delmar Media

Zareen Taj Mirza

Robert Sachs Kristin and James Dolan Albert Dwoskin

Motion Picture Association of America, Inc.

Jan Smith Donaldson and Sam Donaldson

C.W. Ellis

Motorola

Jane Erlandson

MTV Networks

Spectrum Science Public Relations, Inc.

The Honorable and Mrs. Melvyn Estrin

National Broadcasting Company

Timmons and Company

Glen Friedman

National Hospice & Palliative Care Organization

Union Pacific Corporation

Mr. and Mrs. John Goddard

NDS Americas, Inc.

Goldman, Sachs & Co.

Tom Nilson

Dr. Anita Gottlieb

Michael Pohl

Schering-Plough Corporation, Inc.

Platinum Survivors Circle

Ray Guilbault

Red Tettemer

Joseph Abruzzese

Gordon Halverson

Ted Rogers

American Airlines, Inc.

Dr. Catherine Harvey

Randy Ronning

C. Michael Armstrong

Andrew Heller

Sigmund Roos

Jeff Bewkes

Ed Horowitz

Mark Rosenthal

BIO - Biotechnology Industry Organization

Inpulse Digital TV Group, Inc.

Ryan Phillips Utrecht & Mackinnon

BlueCross BlueShield Association

International Business Machines Corporation

Dr. Neil Schlackman

Lou Borrelli

30

Aryeh Bourkoff

Dr. Dennis W. and Mrs. Linda B. Johnson

Patrick Bresnan

Spencer Kaitz

William Bresnan

L-3 IMC Corporation

Louise Henry Bryson

Richard Leghorn

Judy Chudars

H.F. Lenfest

Lisa Kaeser and William T. Schmidt Ellen and John Stovall Eric Tveter U.S. Trust Company United States Telecom Association (USTA)

Annual report 2003 Mr. and Mrs. Jack Valenti

Orogem Corporation

Alison Wylegala and Stephen Lewis

Dr. Lucy Waletzky

Ovarian Cancer National Alliance

Louisiana Oncology Associates

Joseph Waz Jr.

Dr. Julia Howe Rowland

Kate McGrade

Maggie Wilderotter

Ellen Sigal

Roland McMullen

Willkie Farr & Gallagher

Dr. Joseph Simone

Greg Moyer

Rouzbeh Yassini

Sheldon Stewart

Dr. Fitzhugh Mullan

Dr. Arnold Wax

Kathleen O’Donnell

Gold Survivors Circle

Barbara York

Myrtle Stephens Potter

Abgenix, Inc.

Janis Schiff

Alan Annis

Silver Survivors Circle

Anonymous Donors

Kathryn Anderson Adams

Debra Thaler-DeMers

Marge Berg

Alliance for Lung Cancer Advocacy Support & Education (ALCASE)

The Aker Partners, Inc.

Rita Braver

David Rudd

Jeffrey Spragens

Andre Thurman

Mr. and Mrs. Jeffrey Bulman

American Society for Therapeutic Radiology & Oncology

United Way of the Bay Area

William Cohen

Dr. Anita Auerbach

Dr. and Mrs. C. Norman Coleman

United Way of The National Capital Area

Karlynn BrintzenhofeSzoc

CTFA Foundation

Judy Bernstein Bunzl

Kathleen Flaherty

Butler Derrick

Nancy Glick

Lucinda Nash Dudley

Annie Howell

Geri Elias

Dr. Ada Jacox

Martin Elias

Tina LaMarca

Mr. and Mrs. Robert Fraiman, Jr.

Mary Eileen Lombardo

Dr. Patricia Ganz

Craig Lustig

Michael and Emily Goldberg

Massachusetts Society of Clinical Oncologists, Inc.

Dr. Arnoldus Goudsmit

Scott McGraw

The Honorable Lloyd Hand and Mrs. Ann Hand

Jane Adams

Debra Michel

James Hawkins III

Eugene Ander

Neopharm, Inc.

Barbara Hoffman

Lois Anderson

Sheila Nevins

Wilhelmina Cole Holladay

Tronette Anochie

News Corporation

Sandra Kay Jung

Mr. and Mrs. Stuart Antman

Allen Neyman

Dr. Deborah Kamin

Wilma Antman

Oncology Associates, Inc.

Dr. Patricia Legant

David Anton

Fran Visco Dr. Susan Weiner Lisa and Charles Wise Dr. Robert Young Brad Zebrack

Survivors Circle Dr. Martin Abeloff Doris Ach Diane Adams

31

National Coalition for Cancer Survivorship Joy Appelbaum

Dorothy Burkhart

Marilyn Dickson

Robert Arthur

Mary Burrows

Susan Diekman

Asian & Pacific Islander

Susan Lowell Butler

Pesach Diskind

American Health Forum

Allan Cabading

Anne Donohue

Association of Northern California Oncologists

Edward Caffarella

Suzanne Ducat

Geraldine Calaunan

Dr. and Mrs. John Durant

Dr. Bruce Campbell

Fred Duren

Caplan Associates, Inc.

Barbara Elliott

Lorraine Carren

Charles Ellis

Kate Carstensen

Kenneth Ellis

Robert Carter

Lesley Eubanks

Phil Catalfo

Andrea Fatula

Alice Cave

John Feight

Dr. Clare Buie Chaney

Barbara Feldman

Channel, Inc.

Fred Feldman

Paul Chauvin

Peter Fenn

Glenn Cheley

Melba Fishman

Sonja Christopher

Susan Fitzgerald

Dr. Elizabeth Clark

Pauline Flynn

Dr. Robert Cline

Paul Forst

Dr. Merrill Cohen

Marsha Fountain

Susan Cohen

Joan Frink

Dr. Stephen Cole

Cynthia Gagen

Yvette Colon

Mary Garcia

Jane Comings

Kara Garten

Christina Copley

Margret Geselbracht

Dr. Dale Cowan

Mary Getz

Mary Craig

Jeretta Gilbert

Connie Curley

Margaret Gilbert-Hodges

Margaret Daley

Marianne Glasel

Nancy Daly

Renee Goldman

Eloise De Carlo

Matthew Goode

Janna DeLue

Brad Gordon

R. Neil Dickman

Eric Gordon

Lynda Astle Carol Atkins Amey Baker Kathleen Baker Dr. Charles Balch Janet Baldinger Barbara Jane Barea Lynne Bearman Stacey Beckhardt Barbara Bennett Dolores Bermak Dr. Bernard Bernhardt David Bershstein Helen Biever Judith Blanchard Mildred Bluestein Melinda Boice Alexander Bologna Arthur Boos Mrs. M. W. Bouwensch Loyce Bowen Renee Bradsher Donald Braman, Jr. Cindy Brenner Marian and Jim Brodsky Myrna Brown Suanna Bruinooge Dr. Stephen Bulova

32

Annual report 2003 Cheryl Gould

Mr. and Mrs. Barry Katz

Marnie McHale

Harriet Granger

William Katz

Roy McKie

Irene Handler Grant

Ronnie Linda Kaye

Lynda Means

Jane Greene

Reena Kazmann

Patricia Meier

Beverly Greenfeig

Barbara Kerxton

Ralph Menapace

Thaddeus Grimes-Gruczka

Stan Klein

Barbara Mendlowitz

Miles Haber

Lynn Knight

Karen Meneses

April Hackathorn

Bruce Koch

Laurie Meyer

Mark Haddox

Maria Kril

Harry Mitchell

Marianne Hammerschlag

Judith Krone

Neil Mitchell

Dr. Denis Hammond

Katherine Kropp

John Monagan

Dr. Wendy Harpham

Martha Lacey

Elena Mondini

Hayes & Associates

Tanya and Albert Lampert

Doris Moore

Dr. Richard Herman

Noreen Landers

Barbara Morisi

Rosalyn Hermanson

Maria Laurence

Lois Morris

Jeri Hertzman

Joseph Lecce

Moses Cone Regional Cancer Center

Dr. and Mrs. Al and Alice Hiat

Susan Leigh

Dan Moskowitz

Suzanne Hirsch

Donald Leitgeb

Renee Muellner

Corinne Hoexter

Barbara Lewis

Nina Homel

Shelli Liddell

Multiple Myeloma Research Foundation

Delorita Honora

Little Red Door - Cancer Services of Delaware County

Mark Hopkins Marlene and Charles Hoyler Dr. Elmer Huerta Martha Hupp Edith Ibach Jacqueline Igoe Phyllis Isaacson Gloria Johnson Anne Jones Elaine and Herbert Kamowitz Edward Kaplan Elaine Kaplin Loretta Kasper

John Murphy Kathleen and Bill Murray

Laura Livingston

Joan Nalwasky

Rosemary Locke

National Institutes of Health

Jorge Lubary

Penelope Neale

Kristin Ludwig

Never Too Late Club, Gallaudet University

Dorothy Lundin John Mackie Marcus Maier Edward Mandel Marshalltown Cancer Support Group Mary McCauley Richard McCuen

Helen Nims Violet Noll Jo Ann Novack Anne O’Connell Foote Kossia Orloff Beverly Parker Dee Pearson

Cathy McEneny

Nancy Pecorella

33

National Coalition for Cancer Survivorship Jody Pelusi

Captain Robert Schaper

Julia Taylor

Frances Penan

Selma Schimmel

Stuart Taylor

Dr. Marilyn Perlman

Robert Schnepf

Patrick Terry

Michael Piper

Willy Schumacher

Judi Teske

PMDS, Inc.

Dorothy Schusterman

The Brighter Side

Albert Polekoff

Ellen Scott

John Thorne

Karen Pollitz

Rona Seider

The Toth Family

Ruth Quint

Linda Seligman

Thomas Tourish, Jr.

David Raffo

Claire Sharda

Eric Trules

Angela Ranero

Nancy Sheintal

Anne and Mac Turnage

Joan Rapp

Dr. Vanessa Sheppard

United Way of Greater Los Angeles

Sonia Rappaport

Robert Sherman

Nancy Van Antwerp

Ethel Rawitz

Susan and Fred Sherwood

Marcia Van Orden

Jane Reese-Coulbourne

Linda Sholder

Mary Ellen Verheyden-Hilliard

Dorothy Reichenbach

Mort Silverblatt

Joann Vesole

Suzanne Reuben

Jane Singer

Peter Rez

Aaron Sklar

Leslie Riasanovsky

Gregory Sladek

Irving Rimer

Alan Sloma

Cindy Rittenberg

Joyce Ann Smith

Ernestina Rivera-Withers

Maxine Solvay

Dr. Lillian Robbins

Mark Somerfield

Myrna Roberge

Christopher Spevack

William Roberge

St. Timothy’s Episcopal Church

Stan Whitcomb

Mary Rogers

Mr. and Mrs. Marc Stanley

Theresa Wiegmann

Leonard Rosen

Joel Steiger

Gerald Wiley

Carol Rowehl

Susan Stensland

Shelley Williams

Iris Rudnick

Judith Stephens

Jerold Williamson

Millie Rumerman

Robert Stephens

Delores Woods

Georgea Sacher

Mark Kinsey Stephenson

Raymond Wylegala

Theresa Salazar

Miriam Stephenson

Elaine Young

Carolyn Sanger

Kathleen Steuernagel

Steven Zimmerman

Barbara Sarah

Rosalia Strauss

Lorraine Zocchi

Bela Sastry

Mrs. C. W. Stubblefield, Jr.

Elsa Zollars

Dorothy Vreeland James Walker Kay Walker Kenneth Walls

34

Dr. Anne Wylie Weiher Joan Weiss Lisa Weiss Lucille Weiss Steven Whitaker

NCCS would like to thank and acknowledge the contributions of photographer and fellow cancer survivor, Connie Z. Reider, copy editor Carol E. Macdonald, graphic designer Evniki Voyatzis and author Stacia Grosso. We are also grateful to our board and staff members who agreed to share their portraits and stories in this year's annual report.

1010 Wayne Avenue, Suite 770 • Silver Spring, MD 20910 Phone | 301.650.9127 • Fax | 301.565.9670 • Toll-Free | 877.NCCS.YES www.canceradvocacynow.org • www.canceradvocacy.org • www.cancersurvivaltoolbox.org