PLATINUM2023

E We Foundation

Everyone Is We

Huntsville, AL   |  http://www.theewefoundation.org

Mission

Our mission is to support families affected by Edwards Syndrome or Trisomy 18 and other rare diseases, while changing the medical perspective through advocacy, education, and public policy.

Ruling year info

2019

CEO & President

Sarita Edwards

VP of Operations

Kareem Edwards

Main address

PO Box 6391

Huntsville, AL 35813 USA

Show more contact info

EIN

84-2765554

NTEE code info

Unknown (Z99)

IRS filing requirement

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

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

- Provide resources and support to families impacted by Edwards Syndrome or Trisomy 18 and other rare diseases - Provide comfort care and end of life solutions - Provide mental health support - Provide economic assistance to families experiences financial hardship

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?

LEAP

LEAP is a resource program promoting health literacy, community education, and patient advocacy. LEAP focuses on improving health, financial advocacy, special education, and social service access for individuals, families, and communities living with rare disease, disability, medical complexity, and special health needs.

Population(s) Served
Family relationships
Health

ZEBRA is a comfort care & end-of-life solutions program that supports rare disease families living with life-limiting diagnoses, medical complexities and special health needs. Our comfort care program addresses physical comfort, daily care, mental health, emotional balance & spiritual support. ZEBRA can assist with resources, intervention, counseling, and bereavement support.

Population(s) Served
Family relationships
Health

STRIPE is an economic assistance program designed to assist families with the financial burden associated with caring for an individual with Trisomy 18. Financial burden refers to the direct medical costs, direct non-medical costs and indirect costs experienced by patients. Families facing financial hardship can request assistance for support.

Population(s) Served
Family relationships
Health

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 health education trainings conducted

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

LEAP

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.

Our organization's goals are:

- to support families affected by Edwards Syndrome or Trisomy 18 and other rare diseases, while changing the medical perspective through advocacy, education, and public policy

- to ensure all families affected by Edwards Syndrome, Trisomy 18, have equitable access to quality healthcare, resources, health & financial literacy and disease education

- to ensure patients with chronic illness like Edwards Syndrome, Trisomy 18, have immediate access to quality healthcare, medical resources, and economic assistance, without bias or prejudice

Our strategies to achieve our goals include program development that:

- promotes health literacy, community education, and patient advocacy

- focuses on improving health and social service access for individuals, families, and communities

- provides comfort care & end-of-life solutions to support families living with life-limiting diagnoses, medical complexities and special health needs

- address physical comfort, daily care, mental, emotional & spiritual support

- assist with resources, intervention, counseling, and bereavement support

- offers economic assistance to assist with the financial burden associated with caring for a Trisomy 18 individual

Our capacity to meeting our goals include:

- offering continuing education units as an approved continuing education provider

- hosting monthly educational conversations for patients, caregivers, community leaders, social service workers, and healthcare professionals

- working alongside subspecialty professionals, researchers, and scientists to develop and implement programming

Our progress:

LEAP is a resource program promoting health literacy, community education, and patient advocacy. LEAP focuses on improving health, financial advocacy, special education, and social service access for individuals, families, and communities living with rare disease, disability, medical complexity, and special health needs. The E.WE Foundation’s LEAP Program is an approved continuing education provider.

ZEBRA is a comfort care & end-of-life solutions program that supports rare disease families living with life-limiting diagnoses, medical complexities and special health needs. Our comfort care program addresses physical comfort, daily care, mental health, emotional balance & spiritual support. ZEBRA can assist with resources, intervention, counseling, and bereavement support.

STRIPE is an economic assistance program designed to assist families with the financial burden associated with caring for an individual with Trisomy 18. Financial burden refers to the direct medical costs, direct non-medical costs and indirect costs experienced by patients. Families facing financial hardship can request assistance for support.

Financials

E We Foundation
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Operations

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

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lock

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.

E We Foundation

Board of directors
as of 01/26/2023
SOURCE: Self-reported by organization
Board chair

John Hart

Kenneth Powe

Board of Directors

Shane' Jackson

Board of Directors

Sheyenne Walmsley

Board of Directors

Asia Sticka

Board of Directors

Ashley Nelson

Board of Directors

Deborah Bruns

Advisory Committee

Trinisha Williams

Advisory Committee

Holly Waite

Advisory Committee

Crystal Stephens

Advisory Committee

Helen Hernandez

Advisory Committee

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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 1/26/2023
info Candid has made improvements to the race and ethnicity options.

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
Black/African American
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or straight
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
Black/African American
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 03/04/2022

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 analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • 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 disaggregate data by demographics, including race, in every policy and program measured.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.