Children's Cancer Cause

The Voice of Children With Cancer

aka formerly Children's Cause for Cancer Advocacy   |   Washington, DC   |  https://www.childrencancerscause.org/

Mission

A long, healthy life for every child with cancer. Children's Cancer Cause is the leading national advocacy organization working to achieve access to less toxic and more effective pediatric cancer therapies; to expand resources for research and specialized care; and to address the unique needs and challenges of childhood cancer survivors and their families. Children's Cancer Cause leads efforts to ensure that these needs and perspectives of children with cancer are integrated into the highest deliberations on health care and cancer policy.

Ruling year info

1999

Chief Executive Officer

George Dahlman

Main address

1325 G Street NW Suite 540

Washington, DC 20005 USA

Show more contact info

Formerly known as

The Children's Cause, Inc.

EIN

11-3485631

NTEE code info

Cancer (G30)

Pediatrics Research (H98)

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

SOURCE: Self-reported by organization

1. Access to Care: Families with children diagnosed with cancer face enormous challenges beyond diagnosis including significant financial burdens, insurance restrictions, and geographic barriers to accessing appropriate care. We advocate for these access to care issues. 2. New Treatments: In the past 35 years, only 3 new drugs were approved to treat childhood cancer, in contrast to numerous drugs developed to treat adults. New and better therapies are sorely needed for children battling cancer. We advocate for the children, survivors, and their families at federal agencies like the National Cancer Institute (NCI) and Food and Drug Administration (FDA) for kids who need better treatment. 3. Survivorship After Cancer: There are at least 500,000 childhood cancer survivors in the US, many of whom will experience serious long-term and late effects on their health and well-being. We advocate for their needs.

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?

Survivorship Education

Children's Cancer Cause is dedicated to monitoring, advocating and disseminating information about vital national issues facing children with cancer and their families. Toward that aim, a series of conferences featuring experts in the field and offering guidance on survivorship programs and advocacy strategies is in development.

Population(s) Served

The Kids Action Network is a grasstops/grassroots public policy advocacy network. Members of the Kids Action Network are given the tools and tactics to become effective advocates, and the opportunity to make their voices heard to decision-makers in Washington and state capitols. KAN members have the chance to join with and lead others in their communities to amplify our message.

Population(s) Served

We work closely with leaders in the National Cancer Institute, the Food and Drug Administration, Congress and the pharmaceutical industry to make a difference in the pace and efficiency of getting new treatments to children. We fill a strategic national gap, by advancing policy and system improvements with a sense of urgency from families and survivors that childhood cancer must be eradicated.

Current legislative priorities include:
- Childhood Cancer Survivorship, Treatment, Access & Research (STAR) Act
- BPCA/PREA Reathorization
- NIH/NCI Funding

Population(s) Served

Children's Cancer Cause offers an annual opportunity for childhood cancer survivors to gain valuable cancer advocacy experience. Award recipients receive a scholarship of $2,000.

Population(s) Served

Children's Cancer Cause offers several webinars throughout the year for childhood cancer survivors, advocates, and families, all at no cost to the participants. Some of our past topics include
"Navigating the Childhood Cancer Journey: Resources for Access and Assistance" and "Financial & Access Issues Facing Childhood Cancer Families."

Population(s) Served

Where we work

Affiliations & memberships

Community Health Charities

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 new advocates recruited

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

Kids Action Network

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Members of the newly established Kids Action Network, a grasstops program to train and empower advocates in their local communities.

Number of audience members willing to take action on behalf of a specific issue

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

Childhood Cancer Policy Progress

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Number of government officials who publicly support the advocacy effort

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

Childhood Cancer Policy Progress

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

426 Members of Congress cosponsored the Childhood Cancer STAR Act.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

Children's Cancer Cause works to ensure the needs and perspectives of children with cancer and survivors are integrated into the highest deliberations on health care and cancer policy at the federal level. We also provide education resources for families dealing with a childhood cancer diagnosis.

Children's Cancer Cause provides policy analysis and recommendations to lawmakers and agency officials as well as implement several programs aimed at educating, training and resourcing childhood cancer advocates. We provide scholarships for childhood cancer survivors as well as free materials and webinars.

Our staff and advisors develop and foster relationships with Members of Congress, Congressional staff, agency officials and other cancer advocacy organizations in order to promote sound policies that will have a positive impact on children with cancer. We utilize technology including social media to communicate regularly with our audience of policymakers and advocates.

We are proud of the progress we have made in terms of legislation passed to promote pediatric cancer research, surveillance and drug development as well as our work in ensuring that the Affordable Care Act protected vital interests of the childhood cancer community, including the removal of pre-existing conditions exclusions, lifetime caps on insurance coverage and the ability to stay on parents' insurance plan until age 26. We still have work to do in order to ensure childhood cancer patients have more effective, less toxic treatments available to them and that childhood cancer survivors have an improved quality of life including unimpeded access to proper care.

Children's Cancer Cause has recently:

• Sent over 1,300 letters and emails to Congress on behalf of childhood cancer advocates like you from across the nation.
• Awarded academic scholarships to seven childhood cancer survivors, all pursuing their dreams while dealing with the toll cancer has taken on each of them.
• Launched a state advocacy program, offering resources and coordination to advocates working on childhood cancer issues in their state capitals.
• Presented the Leonard M. Rosen Memorial Research Award to Dr. David Poplack from Texas, a pioneer in the field of childhood cancer and best known as the developer of Passport for Care, an online tool to help survivors manage their long-term care. Dr. Poplack says:

"This has become the go-to organization for people interested in childhood cancer advocacy. Children's Cancer Cause has done a wonderful job in developing landmark legislation and training people how to become advocates."

Children’s Cancer Cause is meeting the COVID challenge head on by:

• Providing a record number of scholarships to childhood cancer survivors through our College Scholars Program in recognition of the devastating financial impact of this pandemic.
• Fighting for expanded paid family leave policies to protect Americans most at-risk including childhood cancer survivors with chronic health conditions like heart and lung damage.
• Mobilizing to secure increased childhood cancer research funding, including emergency funds to help restart clinical trials disrupted by the pandemic.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To inform the development of new programs/projects, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    Children's Cancer Cause responded to the feedback from webinar participants to include more survivorship content in our webinars.

  • With whom is the organization sharing feedback?

    Our staff,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback,

Financials

Children's Cancer Cause
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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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Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Children's Cancer Cause

Board of directors
as of 8/13/2020
SOURCE: Self-reported by organization
Board chair

LeAnn Jackson

Quintiles

Term: 2020 - 2021

Susan Weiner

Children's Cancer Cause

Steven Shak

Genomic Health, Inc.

John Stewart

Stewart, Wright & Associates, LLC

Jennifer Niedermeyer

No Affiliation

Lynn Bayard

Paul, Weiss, Rifkind, Wharton & Garrison, LLP

Wylie Chen

David Poplack

Texas Children’s Hospital

Susan Scherr

No Affiliation

Beth Silber

No Affiliation

Adam Rosen

Attorney

Michael Link

Stanford University School of Medicine

LeAnn Jackson

Quintiles

Larry Hausner

Society for Women's Health Research

Lauren Neff

Genentech

Lori Ring

Focus Data Solutions

Mary McCabe

Memorial Sloan-Kettering Cancer Center

Daniel Wechsler

Children's Healthcare of Atlanta

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? No
  • 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