The National Children's Cancer Society

Because no family should go through childhood cancer alone.

aka NCCS   |   St. Louis, MO   |  http://www.thenccs.org

Mission

The National Children's Cancer Society provides emotional, financial and educational support to children with cancer, their families and survivors.

Ruling year info

1988

Principal Officer

Mr. Mark Stolze

Main address

500 North Broadway Suite 1850

St. Louis, MO 63102 USA

Show more contact info

EIN

37-1227890

NTEE code info

Pediatrics (G98)

Cancer (G30)

Cancer (G30)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Childhood cancer causes financial hardship. It is estimated that nearly 16,000 children will be diagnosed with cancer in the U.S. annually. 20% of these children will be living in poverty at the time of their diagnosis and another 10-15% who live above the poverty level when they are diagnosed will be living in poverty during the course of their treatment. The families we assisted last year reflect those facts: • 55% of the families helped last year reported an annual family income of less than $30,000 • 95% of families said that childhood cancer has been a financial burden for their family • One of their most difficult struggles is simply getting their child to and from treatment; the 2020 pandemic only increased these challenges. Financial hardship can also impact a child's likelihood to survive. Children from low income families have a higher risk of missing their doses of medicine and are more likely to relapse earlier than children who are not.

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?

Transportation Assistance Fund

The Transportation Assistance Fund ensures children with cancer have access to treatment. The fund alleviates the financial burden of travel and lodging for families who have a child with cancer. This includes transportation expenses such as mileage and airfare, and lodging when a child needs to stay near the hospital for treatment and nonprofit lodging is unavailable.

Population(s) Served
Children and youth
Families

The Emergency Assistance Fund provides a $300 stipend to families who have a child that has been inpatient or away from home for (15) consecutive days. Assistance may be used for mortgage, rent, utility payments, childcare, health insurance premiums, car expenses or treatment-related expenses such as meals away from home, prescriptions and parking.

Population(s) Served
Families
Caregivers

Our Family Support Program helps ease the emotional strain a childhood cancer diagnosis takes on families by providing a case manager who stands by a family’s side throughout their journey. NCCS case managers are trained in providing practical and emotional support to parents and caregivers. These dedicated individuals offer support during difficult times, educate parents and caregivers on how to best advocate for their child and provide referrals when needed.
Our Mentoring Program provides an opportunity for children ages 10-17 who are in treatment to be partnered with childhood cancer survivors who are now young adults. The mentors are an experienced guide, trusted ally, and caring role model in helping face the challenges of childhood cancer.

Population(s) Served
Families
Caregivers

Beyond the Cure(BTC) prepares survivors and their families for life after cancer. Our Late Effects After Treatment Tool (LEATT) provides survivors with a private, customized online assessment of potential late effects based on their diagnosis and treatment. In addition, Beyond the Cure sponsors regional conferences and offers free publications so survivors can gain a better understanding of the effects of their treatment.

Population(s) Served
Children and youth
Families

The Global Outreach Program provides hundreds of millions of dollars in donated pharmaceuticals and medical supplies to more than 39 countries. The facilities we support have treated thousands of children worldwide, positively impacting survival rates around the globe.

Population(s) Served
Children and youth

Where we work

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 families served

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

Children and youth

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of referring pediatric oncology treatment centers

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

Output - describing our activities and reach

Direction of Success

Increasing

Number of states with families receiving financial assistance

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

Output - describing our activities and reach

Direction of Success

Increasing

Amount of free educational materials distributed

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

Output - describing our activities and reach

Direction of Success

Increasing

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.

-Improve access to treatment for children with cancer

-Ease the financial burden of childhood cancer so families can focus on their sick children

-Provide emotional and practical support for caregivers, survivors, and other individuals who are impacted by childhood cancer

-Prepare survivors and their families for life after cancer

-Provide monetary support to help alleviate some of the financial burden of travel and lodging for families who have a child with cancer. This includes transportation expenses such as mileage, airfare and lodging when a child needs to stay near the hospital for treatment and nonprofit lodging is unavailable.

-Provide additional emergency financial assistance that may be used for mortgage, rent, utility payments, childcare, health insurance premiums, car expenses or treatment-related expenses such as meals away from home, prescriptions, and parking.

-Provide survivors with a private, customized online assessment of potential late effects based on their diagnosis and treatment.

-Educate survivors and their families on the potential effects of their/their child's diagnosis and treatment.

-Assist childhood cancer survivors achieve their personal and professional goals

-For over three decades NCCS has provided support to nearly 45,000 children fighting childhood cancer

-NCCS has dedicated more than $68 million to families over its lifetime

-NCCS not only supports families emotionally and financially during childhood cancer, but NCCS's commitment continues in the new normal of childhood cancer survival

-Provide a specially-trained case manager offering practical and emotional support throughout a family's cancer journey

-Sponsor regional conferences and offer free publications to prepare survivors and their families for life after cancer

-Award (58) $3,500 college scholarships to childhood cancer survivors each academic year

The NCCS works tirelessly and compassionately to support families making their way through the daunting world of childhood cancer. With over thirty years of experience, the NCCS has distributed more than $69 million to help nearly 46,000 children with cancer and their families. The NCCS knows how to navigate this world, helping families get where they need to be—physically, financially, and emotionally—to give them hope, and to give their children the best possible shot at survival.

We are constantly working on generating additional revenue to expand our program services. We would like to provide meal assistance which is a significant need for families but one that requires additional revenue.

There is always more - more families to assist, more children to get the treatment they need to survive, increase the amount of assistance we can offer, sponsor additional conferences, have more survivors use our tools, etc.

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 shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Families battling childhood cancer who need financial assistance with non-medical expenses associated with having a child in treatment. Childhood cancer survivors who want to attend a post-secondary school to fulfill their personal and professional goals.

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

    Electronic surveys (by email, tablet, etc.), Case management notes,

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

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    We learned how important meal assistance is for parents when their child is in the hospital. We sought out a grant to fund meal support and re-instated the program.

  • With whom is the organization sharing feedback?

    Our staff,

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, We don’t have the right technology to collect and aggregate feedback efficiently, It is difficult to find the ongoing funding to support feedback collection,

Financials

The National Children's Cancer Society
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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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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.

The National Children's Cancer Society

Board of directors
as of 04/19/2022
SOURCE: Self-reported by organization
Board chair

Mark Slocomb

Merrill Lynch

Mark Stolze

NCCS

Eric Stange

Accenture

Jeff Michalski, M.D.

Washington University School of Medicine

Harry Mueller

Delta Group Electronics

Sue Engelhardt

No Affiiliation

Joe Aubuchon

No Affiliation

Robert Hayashi, M.D.

Washington University School of Medicine

Timothy Dilg

School District of Clayton

Kristy Dougherty

Altus Health System

Tom Guebert

No Affiliation

Scott Hammack

Hammack Advisory Group

Timm Schowalter

Sandberg, Phoenix & Von Gontard P.C.

Scott Stringer

Marcum LLP

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

Organizational demographics

SOURCE: Self-reported; last updated 3/30/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 03/30/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.