A light of hope for all rare diseases
as of May 2023
as of May 08, 2023
The people, governance practices, and partners that make the organization tick.
Founder / Ceo
Immigrant single mother of a 25 yr old daughter born with a Congenital anomaly in her right hand and my 12 yr old daughter that has a disease in her right eye that she has been close to losing her eyesight several times.
The founder of the Akari Foundation, Named after her youngest daughter meaning light as a light of hope, an organization she started after meeting her former partner’s twin kids that have been diagnosed with Duchenne Muscular Dystrophy. While she was trying to help the family, she noticed that there was a lack of information in Spanish. She began translating the information she was finding in English to Spanish. Ever since the founding of the organization, Luisa has collaborated with other Duchenne organizations to expand Akari's mission to help families by providing them with access to information and support in their native language. Aside from working with the Akari Foundation, Luisa is a mother of two beautiful girls and has a full time marketing job.
Akari FoundationOfficers, directors, trustees, and key employees
SOURCE: IRS Form 990
There are no highest paid employees recorded for this organization.
Akari FoundationBoard of directors
as of 04/15/2023
Board of directors data
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
Board orientation and educationDoes 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 oversightHas the board conducted a formal, written assessment of the chief executive within the past year ? Yes
Ethics and transparencyHave the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
Board compositionDoes the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
Board performanceHas the board conducted a formal, written self-assessment of its performance within the past three years? Yes
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
The organization's leader identifies as:
Race & ethnicity
Equity strategiesLast updated: 12/19/2020
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
- We review compensation data across the organization (and by staff levels) to identify disparities by race.
- We ask team members to identify racial disparities in their programs and / or portfolios.
- 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 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.
- We use a vetting process to identify vendors and partners that share our commitment to race equity.
- We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
- 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 help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
- We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
- 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.