PLATINUM2023

Colorectal Cancer Alliance

Tomorrow Can't Wait

aka Colon Cancer Alliance or Undy Run/Walk or Dress in Blue Day   |   Washington, DC   |  www.ccalliance.org

Mission

The Colorectal Cancer Alliance empowers a nation of passionate and determined allies to prevent, treat, and overcome colorectal cancer in their lives and communities. Founded in 1999 and headquartered in Washington, D.C., the Alliance advocates for prevention, magnifies support, and accelerates research. We are the largest national nonprofit dedicated to colorectal cancer, and we exist to end this disease in our lifetime.

Ruling year info

1999

CEO

Mr. Michael Sapienza

Main address

1025 Vermont Avenue, NW Suite 1066

Washington, DC 20005 USA

Show more contact info

EIN

86-0947831

NTEE code info

Cancer (G30)

Cancer Research (H30)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Walk to End Colon Cancer

Colorectal cancer is the second deadliest cancer, but it’s highly preventable with screening and very treatable with early detection. Access to timely screening and high-quality treatment leads to better health outcomes. Still, about a third of people are not getting checked as recommended. A stigma around this disease limits access to life-saving knowledge, preventive action, and high-quality care. When we #WalkLoud, we stop the silence. The Alliance advocates for prevention, magnifies support, and accelerates research. The Walk to End Colon Cancer, formerly the Undy RunWalk, supports this life-saving work by building community and raising funds. Every step brings us closer to a world free of colorectal cancer. The Walk to End Colon Cancer is in 18 cities and is open to all ages. We have a 5K walk and a 1-mile turnaround to make it inclusive for all abilities. It's a chance for those affected by colorectal cancer to gather to turn up the volume to stop the silence.

Population(s) Served
Adults
People with diseases and illnesses

The toll-free helpline (877-422-2030) is answered by our trained and dedicated patient support team to provide support and information for those facing colorectal cancer.

Call us for: Access to resources and services. Connection to peers, volunteer program, or a Buddy who has been through a similar experience. Private online support with survivors, caregivers, friends, and family members who know exactly what you’re going through. Guidance throughout your journey.

Population(s) Served
People with diseases and illnesses
Adults

Colorectal Cancer Alliance's Blue Hope Financial Assistance Fund and Screening Support is committed to helping you overcome the barriers to screening and face your treatment head-on. Whether you’re struggling to pay your rent, fill your prescriptions, or put food on the table, Financial Assistance helps with your bills so you can take care of yourself. For qualifying individuals, Blue Hope Financial Assistance and Screening Support could cover the cost of a screening test, or a $300 one-time financial stipend to help cover screening-related expenses, or a one-time $200 stipend to cover treatment-related expenses for those currently in treatment for colon or rectal cancer. Through the legacy donation of Carol Green and her family, Blue Hope Financial Assistance helps families receive a potentially life-saving screening test or lessen the financial burden of treatment.

Population(s) Served
Adults
People with diseases and illnesses

The Buddy Program is a free, nationwide peer-to-peer program with over 600 mentors across different ages, backgrounds, and diagnoses. Our certified Patient & Family Support Navigators are here to connect you with a vetted Buddy who has been through a similar diagnosis to offer meaningful and useful advice that helped them get through colorectal cancer. As a patient, survivor, or caregiver, you know better than anyone else what it is like to go through treatment, how to deal with side effects, and how to manage all the emotions—highs and lows—that come with a cancer diagnosis. Request a Buddy or share your experience and expertise by volunteering as a peer-to-peer Buddy to another patient, survivor, or family member.

Population(s) Served
Adults
People with diseases and illnesses

Our certified patient and family support navigators guide you through your screening, treatment, or survivorship journey, all to make life just a little easier. They not only understand the system, but many have been in your shoes. Our patient and family support navigator program is the first of its kind in the colorectal cancer space.

The Alliance's Patient & Family Support Navigators are certified in cancer care navigation principles and uphold the following core competencies: Support the overall cancer experience with attention to personalized resources, science-based information, and shared decision-making. Offer holistic, culturally competent, person-centered support services. Maintain confidentiality, respect, and professionalism. Identify social determinants & barriers to care and offer solutions.

Population(s) Served
Adults
People with diseases and illnesses

BlueHQ.org is the Colorectal Cancer Alliance’s new patient and caregiver online support hub. Launched in 2022, BlueHQ makes it easy to find personalized colorectal cancer support, without endless online searching. BlueHQ brings all of the Alliance’s information, resources, and services into one personalized platform for colorectal cancer patients and caregivers. You can find all the information you need, chat with a navigator, or connect with others like you in AllyToAlly, right in your BlueHQ account. The platform is a mobile-optimized website accessed by your computer, tablet, or phone through the web browser. Take control of your colorectal cancer journey with BlueHQ.

Population(s) Served
People with diseases and illnesses
Adults

The Alliance’s screening quiz, available at quiz.getscreened.org, gives users a free colorectal cancer screening recommendation based on their individual risk factors. Colon cancer is common and deadly. It can be prevented with screening, and it's highly treatable when caught early. Most people should start getting checked at age 45. The screening quiz provides personalized screening options based on your family history, symptoms, and other factors. Getting checked for colon cancer can save your life.

Population(s) Served
Adults
Adults
Adults
People with diseases and illnesses

Where we work

Awards

Shorty Award for LEAD FROM BEHIND in "Public Service Announcement" 2023

Shorty Awards

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of Buddy Program participants

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Related Program

Buddy Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

A survivor or caregiver, who has dealt with a cancer diagnosis, shares their experience and expertise by volunteering as a peer-to-peer Buddy to another patient, survivor or family member.

Number of Helpline phone calls/inquiries

This metric is no longer tracked.
Totals By Year
Related Program

Toll-free Helpline

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our team of experts include colon cancer survivors and caregivers of patients. If you’re in need of resources, guidance, or a listening ear during your journey, we are here to help - call us.

Total dollar amount of financial awards distributed to patients

This metric is no longer tracked.
Totals By Year
Related Program

Blue Hope Financial Assistance Fund and Screening Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

For qualifying individuals, our financial assistance will cover: the cost of a screening test or a stipend to help cover screening-related expenses; or a stipend to cover treatment related expenses.

Number of patients receiving financial assistance

This metric is no longer tracked.
Totals By Year
Related Program

Blue Hope Financial Assistance Fund and Screening Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Total dollar amount awarded research in three primary areas: young onset colorectal cancer, immunotherapy and biomarkers, and patient-centered research

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The Alliance funds organizations in Walk cities that are making strides to knock out colon cancer by promoting access to screening, conducting research and connecting patients to treatment.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Prevention: March Forth to save 100,000 lives through awareness and prevention by 2029. Screening is the number one way you can reduce your risk for this unique cancer. While screening is the most important step you can take – it's not the only one. You can take charge of your health by knowing your family history and possible risk factors, eating a balanced diet, exercising, limiting alcohol use and not smoking. Together, this is a cancer we can do something about.

Patient Support: Increase the number of patients and families served annually to 750,000 by 2024. You're not alone – our patient support team is here to provide hope and support to you and your family, while connecting you to the latest information, expert resources and cutting-edge tools that you need to get through a cancer diagnosis.

Research: Commit $30 million to innovative and life-saving research by 2026. Our research agenda includes the following: advancing biomarker research, understanding why those under 50 are increasingly diagnosed with colon cancer, decreasing late-state diagnosis of high-risk populations, closing the referral gap for screening and diagnostic testing, and advancing long-term survivorship psychosocial concerns. We view patients, researchers, medical institutions and industry as pivotal allies for pursuing this mission.

The Colorectal Cancer Alliance hosts annual strategy sessions to plan the following year's goals and the plan for reaching these goals. Our strategy sessions include gathering data via surveys to constituents' focus groups.
Current strategies for our pillars are as follows:

Prevention – Our Screen Pillar, which includes our prevention and early detection efforts, is focused on raising awareness and navigating patients to the screening(s) that fit their risk level. We also support patients through screening completion, including removing barriers to access through digital and live patient navigation.
Whether it's providing financial assistance to support those in need of screening (co-pay, transportation, child care fees) or covering the cost of colonoscopies, we are saving lives via this program.

Patient and Family Support – Whether it’s a new diagnosis, a continuation of the treatment or survivorship journey, or a caregiver experience, the Alliance is here with trained experts, a national network of survivors and advocates, and a wealth of information to help. Through our vast network of peers or direct connection to a certified Patient and Family Support Navigator, the Alliance's Care Pillar provides everything from emotional support to financial assistance to medical journey support and a nation of allies.

Research – Accelerating science to save lives. The Alliance's Cure Pillar is making progress towards ending this disease in our lifetime through our own patient-focused research efforts, funding critical studies through the Chris4Life Research Program, advancing opportunities for patient input along the research continuum, and offering innovative tools to help patients navigate clinical trials and targeted treatment options. We fund research with significant funding to established institutions and researchers, as well as smaller grants to young investigators on niche topics (biomarkers, young onset colorectal cancer, immunotherapy).

Prevention – We utilize our Run/Walk series that takes place in 26 locations across the United States to raise awareness of screening as well as provide direct funding to local screening programs. Additionally, colorectal cancer awareness month (March) is where we amplify our message and taking action for getting screened.

Patient and Family Support – Our team of Patient and Family Support staff provide these services directly and as the demand for services increase, we will expand our team to meet the need of the patient and caregiver community.

Research – Through partnership with our Medical Scientific Advisory Board as well as other institutions throughout the country help us identify these gaps and most critical areas in need of funding.

Prevention – The Alliance continues a comprehensive marketing campaign targeting communities at the highest risk for CRC in cities including the District of Columbia, Philadelphia, and Atlanta. The campaign alerted the public to the continued risk of CRC and the necessity of screening.

Patient and Family Support –The Alliance also expanded its patient navigation programs, including developing a digital patient navigation platform that guides individuals to personalized screening recommendations and provides access to additional support via its live patient and family support navigators. The combined effort reached hundreds of thousands of people across the United States.

Research – In its ongoing efforts to fund $30M in CRC research by 2026, the Alliance is funding 7 research studies.
Prevention – Reaching more underserved populations through local partnerships and targeted awareness campaigns addressing the underserved populations.

Patient and Family Support – With more than one million colon cancer patients and survivors living in the United States, we have a long way to go to reach the majority of patients and caregivers impacted by the disease.
Research – Identifying the most effective funding mechanism (fewer larger grants vs. more smaller grants) to determine the biggest impact with available funds.

Financials

Colorectal Cancer Alliance
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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Colorectal Cancer Alliance

Board of directors
as of 10/31/2023
SOURCE: Self-reported by organization
Board chair

Lee Dranikoff

no affiliation

Patrick Jackson, M.D., FACS

Medstar Georgetown University Hospital

Kevin Lewis

PwC

Frank Sapienza

The Drug and Chemical Advisory Group, LLC

David Schoeman

McKinsey & Company

Charlie Guevara

VO

Craig Melvin

MSNBC

Edith Mitchell, M.D., FACP, FCPP

no affiliation

Carmen Marc Valvo

no affiliation

Joe Whalen

no affiliation

Avi Benaim

A.B.E. Networks

Jana Babatunde-Bey

J. Bey Entertainment, LLC

Kay Chandler

Cooley LLP

Amy Low

Emerson Collective

John Marshall, M.D.

MedStar Washington DC Integrated Hematology Oncology Division

Jennifer DellaRatta Redmond

Scott Soussa

Angelo Gordon

John Woerner

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No