GOLD2023

Ninjas Fighting Lymphedema

winourfight

aka NFLF   |   Clayton, MO   |  www.winourfight.org

Mission

Our Vision is to bring awareness about the devastating effects of lymphedema in our communities and inspire patients to stay compliant with treatments offered. Our goal is to promote and create a lifestyle that focuses on living a positive life with lymphedema. Our Mission is to educate our lymphatic community and medical professionals concerning the importance of early diagnosis, compliance, and resources needed to reduce the medical costs epidemic. We focus on a proactive approach, in combination with our compliance programs and partnerships, we will provide the resources necessary to promote a healthy lymphatic lifestyle and reduce the financial burden of lymphedema.

Ruling year info

2017

Co-Founder

Amy Jo Rivera

Main address

222 S. Meramec Ave Ste 202

Clayton, MO 63103 USA

Show more contact info

EIN

46-2710794

NTEE code info

Birth Defects (G20)

Public, Society Benefit - Multipurpose and Other N.E.C. (W99)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

In the United States, it is estimated that 1-2 million or people suffer from primary lymphedema and 2-3 million people suffer from secondary lymphedema (most cancer survivors). Approximately, 94,000 Missourians have lymphedema alone. Our Vision is to bring awareness about the devastating effects of lymphedema in our communities and inspire patients to stay compliant with treatments offered. Our goal is to promote and create a lifestyle that focuses on living a positive life with lymphedema. Our Mission is to educate our lymphatic community and medical professionals concerning the importance of early diagnosis, compliance, and resources needed to reduce the medical costs epidemic. We focus on a proactive approach, in combination with our compliance programs and partnerships, we will provide the resources necessary to promote a healthy lymphatic lifestyle and reduce the financial burden of lymphedema.

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?

Garment Funding

NFLF provides financial assistance to those who qualify. Each patient is allowed to apply once a year for the garment program.

Population(s) Served
Adults

NFLF provides financial assistance to those who qualify for therapy, DME equipment such as a pneumatic pump, nutrition, fitness and other lymphatic treatments.

Population(s) Served
Adults

Where we work

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.

Ninjas Fighting Lymphedema's goal is to reduce misdiagnosis and increase compliance programs in every hospital and treatment center in the U.S. by 2026. We will promote and create an open dialogue with patients and medical professionals.

1. Wellness: We are working to understand, prevent and treat lymphedema through early detection, nutrition, compliance, and overall wellness.
2. Care: We ensure all patients have access to timely diagnosis and treatment plans.
3. Community: We are creating communities that support everyone who is affected by lymphedema.
4. Advocacy: We provide information and guidance to people affected by lymphedema. We show policymakers the devastating effects of untreated lymphedema and why they must fund insurance coverage for treatments.

NFLF is the only lymphatic organization attacking the disease on all fronts—in financial assistance, wellness programs, education, advocacy, and global outreach.

• Our wellness programs seek to overcome barriers to care and ensure that everyone has access to, qualified lymphatic screening, diagnosis and treatment.

We’ve educated hundreds on the importance of early detection, diagnosis and effective treatments that are proven to reduce the stages of lymphedema. We have a better understanding of the genetics of lymphedema and overall understanding of the lymphatic system. This helps tailor the screening process, diagnosis, treatment strategies to individuals.

In the United States, it is estimated that 1-2 million or people suffer from primary lymphedema and 2-3 million people suffer from secondary lymphedema (most cancer survivors). There is much more to be done to understand the disease.

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 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

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

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Ninjas Fighting Lymphedema
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Operations

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

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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.

Ninjas Fighting Lymphedema

Board of directors
as of 07/02/2023
SOURCE: Self-reported by organization
Board co-chair

William Rivera


Board co-chair

Larry Cohn

Mildred Pettiford

Larry Cohn

William Rivera

Amy Rivera

Gina Baldwin

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? Not applicable
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • 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? Not applicable
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Not applicable
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 7/2/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
William Rivera
Disability status
Person with a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability