E We Foundation
Everyone Is We
Programs and results
What we aim to solve
- 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
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.
ZEBRA
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
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.
Where we work
External reviews

Photos
Our results
How does this organization measure their results? It's a hard question but an important one.
Evaluation documents
Download evaluation reportsNumber 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
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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
What are the organization's key strategies for making this happen?
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
What are the organization's capabilities for doing this?
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
What have they accomplished so far and what's next?
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
Unlock nonprofit financial insights that will help you make more informed decisions. Try our 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.
Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
SubscribeBuild 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.
Connect with nonprofit leaders
SubscribeBuild 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 directorsas of 01/26/2023
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
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
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:
The organization's co-leader identifies as:
Race & ethnicity
Gender identity
Sexual orientation
Disability
Equity strategies
Last updated: 03/04/2022GuideStar 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
- 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.
- 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.