PLATINUM2024

Akari Foundation

A light of hope for all rare diseases

san antonio, TX   |  TheAkariFoundation.org
GuideStar Charity Check

Akari Foundation

EIN: 82-2557369


Mission

Mission: To educate, empower & advocate to the Hispanic Immigrant community, help with Resources, awareness, advocacy & education in rare disease, specializing in Duchenne Muscular Dystrophy.

Notes from the nonprofit

2024 Programs: Community Programs and Education: We are dedicated to educating & empowering our community through informative programs, raise awareness, promote knowledge, and create a sense of unity within the Hispanic population facing rare diseases. Family Support and Resources: We provide unwavering support and essential resources to families impacted by rare diseases. We aim to make their journey more manageable and give them the tools they need to thrive. Akari Resources & Support Program. Akari Ambassadors (Includes 10 free sessions w/ a licensed psychologist). Akari Diagnosed Kit Advocacy, DEI, and Awareness of Rare Diseases & Duchenne Programs: Advocacy & DEI are at the core of our efforts. We strive to raise awareness and advocate for change, ensuring that the needs & rights of individuals w/ rare diseases are recognized and addressed. Akari Advocacy and Public Policy Program Akari Outreach & Awareness. Akari Legal Support & IEP Program

Ruling year info

2017

Founder / Ceo

Luisa Leal

Main address

4507 legend hts

san antonio, TX 78253 USA

Show more contact info

EIN

82-2557369

Subject area info

Medical education

Medical counseling

Musculoskeletal diseases

Community and economic development

Parent education

Population served info

Families

Ethnic and racial groups

Immigrants and migrants

Low-income people

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

Fund Raising and/or Fund Distribution (S12)

IRS subsection

501(c)(3) Public Charity

IRS filing requirement

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

Tax forms

Show Forms 990

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Our only limitation is the lack of funding to support all the programs we have in mind to help our communities. Funding is needed to be able to better reach the community, to let them know we are here to help. Most families receiving a diagnosis don't understand the full extent and progression of the disease, they do not have access to medical research and information in their native Language (or the education required to understand it), they are unaware of the medical professionals that are out there and how to connect with them, also they need help to reach other programs and resources that are out there and available to help them. We are working in the areas of education, advocacy (local and federal) and awareness to empower care teams and reduce the healthcare inequalities that are prevalent and impactful to our community.

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?

Akari resources Program

We have been working and growing our list of resources, and we have been creating alliances with other organizations to help families with their needs; since we do not have those resources yet, we connect our families with other organizations, companies, medical help and particulars that can help our community with basic needs, from food, shelter, medication, wheelchairs, transportation do doctor visits, help to translate documents, etc.
We guide families every step of the way entirely in Spanish.

Population(s) Served
Ethnic and racial groups
Families
Immigrants and migrants
Low-income people
People of Latin American descent

The Akari newly diagnose kit program provides newly diagnosed families with DMD with a backpack with informative, educational, and support content related to the pathology. From the diagnosis, we recognized that parents must know and understand the treatments their children will be prescribed, the frequency they must go to medical appointments, and what other aspects should be taken care of. As a result, The Akari diagnostic kit was created.

Population(s) Served
Caregivers
Parents
Families
Immigrants and migrants
Low-income people

Series of educational webinars entirely in Spanish to support our community’s parent education. Two webinars will be available per month, including topics regarding medical devices, clinical trials, psychology, emotional support and everything about the disease aside from advocacy and awareness.

Population(s) Served
Families
Parents
People with physical disabilities
Immigrants
Low-income people

Initiave that will allow parents with experience in rare diseases and DMD to lead and conduct the accompaniment of the newly diagnosed families. The recruited ambassadors will go through orientation and training provided by program advisors such as health professionals and psychologists to assist the families throughout their journeys.

Population(s) Served

This program aims to create a strategic group of patient advocates that will influence, represent, and spread the reality and the needs of the Hispanic/Latin community affected by DMD. They will advocate and amplify the community’s voice with local, state, and federal legislators to pursue public policies for rare diseases to improve access and delivery of health services.
We have joined and will continue joining different organizations that share the exact cause. We will work with the government and politicians to have a seat at the same table and discuss the relevant issues.

Population(s) Served
Families
Parents
People with physical disabilities
People of Latin American descent
Chronically ill people
Immigrants
Low-income people

Where we work

Awards

Hearts of Gold Award 2024

Gordon Hartman Family Foundation

Affiliations & memberships

Texas Rare 2024

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 new advocates recruited

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

Ethnic and racial groups, Health, Social and economic status, Work status and occupations, Age groups

Related Program

Akari resources Program

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Number of meetings held with decision makers

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

People of Latin American descent, Immigrants and migrants, People with physical disabilities, Chronically ill people, Low-income people

Related Program

Akari resources Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of Facebook followers

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

Immigrants and migrants, Low-income people, People with physical disabilities, Chronically ill people, People of Latin American descent

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of free participants in conferences

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

People of Latin American descent, People with physical disabilities, Chronically ill people, Immigrants and migrants, Low-income people

Related Program

AKARI RARE DISEASE EDUCATIONAL PROGRAM

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Attendance is inclusive of our 22 virtual and 4 in-person educational conferences.

Total number of conferences held

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

People of Latin American descent, Chronically ill people, People with physical disabilities, Immigrants and migrants, Low-income people

Related Program

Akari resources Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Virtual and in-person.

Number of meetings with policymakers or candidates

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

AKARI AMBASSADOR PROGRAM

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Virtual and in-person meetings with policymakers.

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.

Educate and empower the Hispanic community about rare diseases, help with resources, awareness, advocacy, and education, entirely in Spanish, specializing in Duchenne muscular dystrophy. In 2024, we have a renewed focus on advocacy for diversity, inclusion and equity in the Rare Disease space and we aim to expand our opportunities for support network growth. In doing so, we will bring together more families, patients and caregivers and grant them access, free of charge, to valuable resources like industry professionals, easily accessible educational programs and medical experts that can answer questions and have more personalized communication with them, further educating care teams and elevating the level of care provided to the patient. At Akari, we believe that education, access to quality medical care and assistance should not be a privilege possessed only by the elite and English-speaking demographics and we aim to close the gaps on health disparities.

EDUCATE: We conduct outreach programs and educational initiatives to empower the Hispanic community with knowledge about rare diseases, emphasizing Duchenne muscular dystrophy. We aim to ensure that individuals and families have the information they need to make informed decisions regarding their health and well-being.
- Community Programs and Education: This includes two websites, available in English and Spanish, our blog, live and on-demand education utilizing various social media platforms, and our podcast.
- Akari Virtual Educational Webinars
- Akari Industry Education Webinars


EMPOWER: We are here to provide unwavering support and essential resources to families impacted by rare diseases. We aim to make their journey more manageable and give them the tools they need to thrive. We offer valuable resources and support services to help those affected by rare diseases navigate the complexities of their conditions.
- Family Support and Resources: This includes assistance with medical care, financial aid, and emotional guidance.
- Akari Resources & Support Program.
- Akari Ambassadors (Includes ten free sessions with a licensed psychologist).
- Akari Diagnosed kit. (backpack program with educational materials in Spanish)
- Akari Aid Program for Urgent needs (providing medical equipment in USA, MX & LATAM)


RAISE AWARENESS: The Akari Foundation raises awareness about rare diseases, concentrating on the Hispanic community's unique challenges. We strive to eliminate the stigma surrounding these conditions through targeted campaigns and events and foster a more compassionate and understanding society. We work assiduously to raise awareness and advocate for change, ensuring that the needs and rights of individuals with rare diseases, including Duchenne muscular dystrophy, are recognized and addressed.


ADVOCATE: Our organization actively lobbies for policy changes at various levels of government, advocating for improved access to healthcare, treatment, and support for individuals with rare diseases, mainly focusing on the Hispanic population.
- Advocacy, DEI, and Awareness of Rare Diseases & Duchenne Programs: Advocacy, Diversity, Equity, and Inclusion are at the core of our efforts.
- Advocacy, Diversity, Equity, Inclusion, and Awareness of Rare Diseases & Duchenne Programs.
- Akari Advocacy and Public Policy Program
- Akari Outreach & Awareness.
- Akari Legal Support & IEP Program


EDUCATION IN SPANISH: We remain the ONLY organization in the USA dedicated to providing information entirely in Spanish, ensuring that language barriers do not hinder access to crucial resources and knowledge. This commitment underlines our aim to make our programs more accessible and inclusive.

We are a group of parents with kids with Duchenne, with a wide array of backgrounds including medical training, marketing, production, business and contracts; together we hold a passion for our mission and vision. We have created a globally-dispersed multicultural team of bilingual people to help us reach the families, and we are collaborating with other national and international foundations to gain different perspectives and have a well-rounded approach to developing programs for our Hispanic community.

Akari has hosted several in-person workshops and provided free admission, inclusive of meals, to patients and their care team. These workshops provide an opportunity for families to meet and ask medical-related questions with expert physicians, hear about current research and approved therapies and connect to a community for the first time, all of which results in receiving crucial support by removing financial, language, and geographical barriers.
Akari's virtual educational webinars and social media has provided crucial education, information, resources and support to our families, reaching over 440,000 digital impressions across the globe in 2023 alone!
Additionally, Akari has directly connected over 1,100 non-English speaking families to programs, doctors and other support services.
Our team of translators has done excellent work connecting families with the appropriate services and helping them read and translate documents and we provided much-needed translation services to Cure Duchenne. We have partnered with several other industry leaders like the Rare Disease Foundation, NORD, the Muscular Dystrophy Association and, recently, Angel Flights, to expand our reach and our services.

To date, Akari offers a variety of programs tailored to the needs of our community: The Akari Resource Program, The Akari Rare Disease Educational Program, The Akari Ambassadors, The Akari Diagnostics Kit, The Akari Legislative Advocacy Program, The Akari Grassroots Outreach and Awareness Program, The Hispanic Database and Patient Engagement for Equality and Inclusion program, The Akari Supplement Kit and The Akari Lawyers Support program.
Our Futures RoadMap includes strengthening our existing programs while simultaneously expanding in the areas of Research, Advocacy and Nutrition.
If you want to know more about the programs, visit our website TheAkariFoundation.org.

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, To understand people's needs and how we can help them achieve their goals

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

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, 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 demographics (e.g., race, age, gender, etc.), 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, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection

Financials

Akari Foundation
Fiscal year: Jan 01 - Dec 31

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Financial data

SOURCE: IRS Form 990

Akari Foundation

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

Akari Foundation

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

Operations

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

Documents
Form 1023/1024 is not available for this organization

Founder / Ceo

Luisa Leal

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 Foundation

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

Akari Foundation

Board of directors
as of 02/24/2024
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Matthew Beck

Harbor Trading Associates

Shvetali Thatte

Case Western Reserve University School of Medicine

Anthony Williams

Danielle Edwards

Ionis Pharmaceuticals, Inc

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 2/24/2024

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
Hispanic/Latino/Latina/Latinx
Gender identity
Female
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last 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

Data
  • 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.
Policies and processes
  • 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.