Akari Foundation

For a brighter tomorrow

san antonio, TX   |  TheAkariFoundation.org

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

We are currently working on different programs tailored to the needs of our community who suffer from DMD: 1) The Akari Ambassadors, 2) Akari New Diagnostic Kit, and 3) Akari Supplement kit. The first one is focused on an accompanying process for the newly diagnosed families through the participation of relatives of patients who have experience with the disease and who have been trained by professionals. The second program will supply newly diagnosed families with a backpack with informative, educational, and support content related to the pathology in Spanish, which they will need to make informed decisions and access the best possible care. And the third one will offer the families assistance with supplements prescribed by a professional doctor who supports the patient in slowing down the progression of the disease, as we are aware of the side effects of the treatment for Duchenne (corticosteroids), which is why maintaining a healthy and complementary balance is essential.

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

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

Fund Raising and/or Fund Distribution (S12)

IRS filing requirement

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

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

We need more funds to be able to reach to the community, and to let them know we are here to help, a lot of families don't understand the full extend of the disease and the medical professionals that are out there, also they need help to reach other programs that there is out there to help them. We are working in advocacy & awareness porgrams thru out the 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?

classes for parents with kids with muscular dystrophy duchenne

Mission: connect families with different abilities with resources, connections & information, create a bilingual support and education website.

​Vision: Provide information in Spanish, connect with resources and programs to families & children with different abilities, creating a bilingual support program, a website, and create informational materials.

Population(s) Served

Focused on improving the regulatory process and advancing regulatory science for rare disease therapies.
The Advocacy program acts to serve as a comprehensive resource for rare disease advocacy at the state level. Many healthcare regulations and bills that impact the rare disease community are made at the state level.
Focused on responding to and shaping legislative policy impacting rare disease in order to close the innovation gap for the 95% of rare diseases that have no FDA-approved treatment, and facilitate access to eligible patients.

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

The Akari Ambassadors’ program is an initiative that will allow parents with experience in rare diseases & 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.
Once the ambassadors are ready, pairs will be created between ambassadors and the assisted individuals. Activities and sessions will be arranged according to everyone’s schedule and the program's parameters. Alongside this, support, supervision, and monitoring will be provided during the accompaniment and assistance process. It is essential to highlight that there will be acknowledgment for the contributions of all program participants. One of the primary purposes of this program is to help support both mentors and mentees through educational strategies that will allow them to cope with the disease.

Population(s) Served
Caregivers

The Akari New Diagnostic 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 the medical appointments, and what other aspects should be taken care of. As a result, the Akari new diagnostic kit was created.
Registration will be available on our website with fundamental questions to help us identify and benefit our targeted population and mail all the kits accordingly. We will be able to provide not only support and basic educational information fully in Spanish on managing the disease in its different stages, but this will also help recognize the importance of knowing the patient’s needs and planned management that contributes to the safety and well-being of the patient.

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

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. Likewise, we will work with mass media (create alliances with journalists and the news) and advocate electronically through creating and maintaining websites, requesting meetings, and sending letters to politicians. It is worth mentioning that we will focus on creating public policies for health care access to therapies of regulatory processes for rare disease therapies, and we will strengthen the Newborn Screenin

Population(s) Served

The Akari Supplement Kit program is created to provide children, preadolescents, and adolescents diagnosed with Duchenne Muscular Dystrophy with supplements prescribed by a professional doctor who supports the patient throughout the progression of their disease. It is essential to maintain a healthy and complementary balance, which makes supplements an ally to improve the quality of life of affected children, based on theoretical benefits and always under medical prescription.
The parents/guardians/caregivers may request supplements if they comply with some requirements. Once the registration process is completed, the Director of Family Support and Social Services will contact the families who registered their application for a brief presentation of information, education, and support to cope with the stages of the disease. It is essential to clarify that each family will have to undergo nutrition training and learn the value of healthy eating habits to enroll in this program. We will

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

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 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

Advocacy and awareness

Type of Metric

Context - describing the issue we work on

Direction of Success

Holding steady

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

Advocacy and awareness

Type of Metric

Context - describing the issue we work on

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

classes for parents with kids with muscular dystrophy duchenne

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This metric displays the attandace of our community in the educational online conferences held in 2021.

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

classes for parents with kids with muscular dystrophy duchenne

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The amount of online conferences we have held since 2021 for our community.

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.

We want to be able to educate parents in the disease, connect families with available services for Hispanic and immigrant communities.

Working with local social workers to get directly to the people, create workshops and webinars, grow our outreach program working on more grassroots with clinicians. Also attending legislative meeting and continue to advocate for the rights of the rare disease community, as well as creating adecuate programs for our community.

We are a group of parents with kids with Duchenne, with a background in marketing, production, & business, and a passion for our mission and vision. We have created a 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.

We have created several workshops and we been able to connect non English speaker's families to programs, Doctors, and other services through our organization, our team of translators have made an excellent work connecting them with the appropriate services and help them read and translate documents for them. We have joined the rare disease foundation and have partnered up with several other organizations to be able to expand our services.

On other hand,we have been able to create 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 New 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. 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.
  • Who are the people you serve with your mission?

    Hispanic immigrant community in the US and Latin America who suffer from Duchenne Muscular Dystrophy.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls,

  • 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,

  • What significant change resulted from feedback?

    According to our surveys and the feedback we received, we decided to make a few changes and started creating programs that will satisfy and help the newly diagnose families.

  • With whom is the organization sharing feedback?

    Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    Asking for feedback from our community changed and shifted our priorities and how we were accomodating our resources. It helped us to start, create and support programs according to their specific needs.

  • 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

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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.

Akari Foundation

Board of directors
as of 03/08/2022
SOURCE: Self-reported by organization
Board chair

Carlos Lopez

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 6/21/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

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

 

Sexual orientation

Disability

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.