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What is DMD?
Media.
(Versión en español)

Home
What is DMD?
Media.
(Versión en español)

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About Us

Ariel and Enrique Nájera the reason for this organization

Immigrant mother of two daughters 1 with a disease in her right eye and the other one born with a congenital anomaly, she saw how difficult it was to navigate through the medical system due to the language barrier and the legal documentation. She met a family with Twin boys diagnosed with Duchenne Muscular Dystrophy and noticed the lack of information in Spanish about rare diseases and the lack of support for immigrant hispanic families in the United States, she set out to find better possibilities for the children.

Our goal is to create communication links with other families and bring information about available resources,advocacy and education. To that end we have created a website 100% in Spanish specialized in Duchenne Muscular Dystrophy

Our Vision

To have a world where everyone has the same access to opportunities, quality of life, and the development of their full potential. Create a holistic health center to serve the person as a whole, attending to their physical, mental, spiritual, and social needs.

Our Mission

To Educate and empower the Hispanic community on rare diseases, help with resources, awareness, advocacy, and education, specializing in Duchenne muscular dystrophy.

Our Team

Luisa leal

FOUNDER /CEO

Luisa leal

FOUNDER /CEO

An immigrant single mother came to this country at the age of 19 when she was pregnant with her eldest daughter, now 26 years old, who was born with a congenital anomaly in her right hand and her daughter, under 12 years old, who had a disease in her right eye where she was close of losing sight several times. She spent years in hospitals and clinics taking her daughters to therapy, and as an undocumented immigrant, she saw how difficult it was to care for someone with special needs under those circumstances. After meeting the children of her ex-partner and learning about their disease and seeing how difficult it was to find information in Spanish and support for immigrants with this disease, she set out to find a way to support Hispanic families who are going through this disease, thus The Akari Foundation was born.

Email:luisa@theakarifoundation.org

Maria Decavi

Director of family support and social services

Maria Decavi

Director of family support and social services

A journalist and mediator by profession, María is also the mother of a child with Duchenne Muscular Dystrophy.

Her primary role as Director of Family Support and Social Services is to maintain direct contact with families in need. She works closely with a team of parents and professionals to provide help and support to other families with any questions or concerns about navigating this illness.

With vast experience within the Duchenne community, Maria is committed to working closely with each family and addressing their needs.

Email:maria@theakarifoundation.org

Susanna Hunanyan

Medical liaison executive and community defense

Susanna Hunanyan

Medical liaison executive and community defense

Susanna Hunanyan, graduated with a bachelor’s degree in Molecular Biology from the Universidad Autónoma Metropolitana in Mexico City, with some experience in the field of both Medical interpretation and Translation. She enjoys using her skills to contribute with science communication which led her to organize a couple symposiums and then volunteering at her country of origin with the Birthright Armenia program. She aims to not only expand her expertise in the field of genetics but to also be able to help others who suffer from rare diseases such as DMD by providing the proper education and the resources to empower the community.

Email:susanna@theAkarifoundation.org

Carolina Delgado

Office Manager

Carolina Delgado

Office Manager

A Public Accountant by profession, Carolina is a woman with special qualities in administration and management, she is currently the Office Manager of the organization.

In the time that she has been within the organization, she has quickly learned its operation and its vision, this has led her to feel more identified with the cause.
Her personal vision is to be able to be 100% involved in the foundation under the guidance of Luisa Leal and she hopes at some point in her life to travel to the United States and be present in all the foundation's projects.

Email:carolina@theakarifoundation.org

Alexis Lugo

Patient Advocacy Executive

Alexis Lugo

Patient Advocacy Executive

Alexis Lugo is a 23-year-old living in Dallas, Texas. She is a volunteer advocate for the Akari Foundation and she has had experience in working with similar organizations such as ADAPT of Central Texas and Fighting for Blindness. She is majoring in Public Health and Marketing and she has a 2-year-old fur baby. She enjoys being in nature and wants to help create a change in the community and find some sort of equality.

Email:alexis@TheAkarifoundation.org

Paola Tovar

Executive assistant

Paola Tovar

Executive assistant

An English teacher and Medical Interpreter by profession, Paola is a purpose driven woman who loves helping others, especially children. She has worked with special needs children for over ten years and has been a medical interpreter for the last 9 years. She also has experience on social events planning.

Born in Mexico City and raised in Texas, she has been exposed to both cultures and hopes to be able to help the Hispanic community with in the US and other countries, as much as she can, and looks forward to learning and growing with The Akari Foundation with the purpose to continue serving more children with special needs and their families.

Email:paola@theAkarifoundation.org

Monserrath Flores

MEDIA PRODUCER

Monserrath Flores

MEDIA PRODUCER

Originally from Mexico City, she began her career in graphic video and video editing at the age of 20, working as a volunteer in a church in San Antonio Texas, where she learned everything about the world of communication and being able to transmit messages through video. She met Luisa Leal in 2018, and about her foundation for children with muscular dystrophy (The Akari Foundation) and since that year she has worked first as a volunteer and now part of the team in the technical area, covering the events with photos and videos for social networks, created the webinars and among other things.

Email:monse@theakarifoundation.org

Fabiola Losoyo

Thanatology psychotherapist

Fabiola Losoyo

Thanatology psychotherapist

Psychotherapist, mother of Andrés, a young man with Duchenne Muscular Dystrophy, to her personal experience in the difficulty of illness and grief was added her vocation of service and accompaniment towards others, which led her to complete her degree in Psychology, later to intensify his training by completing a master's degree in Thanatology and Sense of Life; as well as graduates in Thanatology and Psycho-oncology, workshops, congresses, and various courses, all in their constant motivation to improve strategies to achieve change, especially in people and families who are going through complicated circumstances of grief or loss, helping to find or restructure his meaning of life.
He is currently at The Akari Foundation as part of the team where he can apply his personal and professional experience always thinking about the well-being of patients and their families, with great willingness, empathy and respect.

Email:psicfabiola@theakarifoundation.org

José Ramírez

Translator

José Ramírez

Translator

He owns his translation services school and has 22 years of experience in professional English to Spanish and Spanish to English translations. he got to know the work of her niece Luisa Leal and The Akari Foundation and he decided to help because he wants people to access and know the information about Duchenne muscular dystrophy in English and Spanish and thus help many families.

Email:framirez@laculturadelingles.com

Saúl Leal

Outreach Coordinator

Saúl Leal

Outreach Coordinator

As the owner of his own business and with his experience as an event organizer and manager, Saul is responsible for organizing both Duchenne and rare disease awareness and fundraising events. He is in charge of looking for opportunities to bring information to affected families both to people who are unaware of the disease, he is also responsible for taking care of the name and maintaining the integrity of the brand in all marketing and communication initiatives of the organization.

Email:saul@theakarifoundation.org

Elizabeth Pérez

Social Media Manager

Elizabeth Pérez

Social Media Manager

Mexican. Information technology and communications engineer by profession. Focused on Digital Marketing through Social Media. Co-Founder and Social Media Manager and content creator of ITICs Digital Agency. She is currently in charge of managing the social media and web team at "The Akari Foundation" with the aim of transmitting the mission and voice of the foundation on its different platforms, happy to collaborate and be part of the foundation. She is also the brand ambassador in our tiktok channel.

Email:kendra@theAkarifoundation.org

Alex Lagunas

WEB DESIGNER

Alex Lagunas

WEB DESIGNER

Mexican, Information and Communication Technology Engineer, Graphic Designer and Web Developer, Founder of ITICS Digital Agency in 2017, whose goal is to help brands with purpose. He has worked internationally with different brands including Mexico, Ecuador, Spain, and Panama. He is currently working on the "The Akari Foundation" project with the purpose of updating and publishing all relevant information through Akari's website.

Email:alex@theakarifoundation.org

Katia Zuñiga

GRAPHIC DESIGNer

Katia Zuñiga

GRAPHIC DESIGNer

Mexican. An Information Technology Engineer by profession, he specialized in Graphic Design for social networks and has worked in this area since 2017 when he started working at ITICS Digital Agency, where he learned to work with clients from different parts of the world. Katia learns about the AKARI project through ITICS, who told her about the foundation's mission and decides to join the team excited to learn more about what they do and thus be able to contribute the knowledge that she believes can be useful to the team.

Email:katia@theAkarifoundation.org

Celeste Marchán

CONTENT WRITER

Celeste Marchán

CONTENT WRITER

Mexican. Administration Engineer with specialization in Business Management. reader. Celeste believes that reading is resisting and that is why she creates content about books on social networks. She currently works at ITICS Digital Agency writing content for The Akari Foundation's social networks, with the aim of developing and disseminating relevant information on rare diseases and DMD, and thus contributing to the organization's mission.

Email:celeste@theAkarifoundation.org

Contact

San Antonio, Texas, USA
Info@TheAkarifoundation.org
(+1) 210-630-5451

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Schedule

Monday - Friday
09:00am a 5:00pm
Holidays: Closed