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Turning the tide for rare disease

The Akari Foundation – a light of hope for people with DMD in the Hispanic community

The Akari Foundation was founded by Luisa Leal in 2017. Its mission today is to empower the Hispanic immigrant community in the United States through helping with resources, advocacy and education in rare diseases, specialising in Duchenne muscular dystrophy

By Geoff Case

The Akari Foundation was founded by Luisa Leal in 2017. Its mission today is to empower the Hispanic immigrant community in the United States

Duchenne muscular dystrophy (DMD) primarily affects boys. It is a genetic disorder where muscles progressively degenerate and become weaker because of changes in a protein called dystrophin. When muscle cells lack this protein, they become fragile. Until recently, boys with DMD were expected to live only into their teens, but life expectancy is now increasing. Clinical trials for treatments are ongoing within DMD research.

Luisa’s journey into patient advocacy

Luisa Leal is the mother of two daughters, one with a disease in her right eye and the other with a congenital anomaly affecting her hand, caused by amniotic band syndrome. As an immigrant to the United States, who was undocumented for 24 years, Luisa saw first-hand how difficult it is to navigate through the US medical system with a language barrier and without legal documentation. 

In 2016 Luisa met a family with twin boys who have Duchenne muscular dystrophy (DMD). Luisa was immediately struck by the dearth of information in Spanish about rare diseases and the lack of support for the affected people within the Hispanic immigrant community. 

As Luisa had experienced herself with the care of her own daughters, language was a considerable barrier for Hispanic families affected by DMD, especially when medical terminology was used. This was really impeding the families’ healthcare, so Luisa decided to help by translating. This soon led to her developing a Facebook group where she translated and shared articles about the disease and disseminated information from the DMD workshops and seminars she had started to attend.

Soon, the volume of translation work Luisa was doing became unsustainable—there was a massive unmet need for resources in Spanish. Determined to push forward for the community as a whole, in 2017 she started a non-profit organisation to keep up. 

Luisa’s first daughter is called Akari, a Japanese word meaning light. The work that Luisa is now doing through the foundation makes this particularly meaningful. “For every parent, a child is like a little light of hope.”

Increasing awareness for Duchenne muscular dystrophy

Over the five years since the foundation started, Luisa has seen other needs in the Hispanic rare disease community. She soon realised that families did not have enough awareness about the condition’s severity and prognosis. Sometimes doctors were not conveying those properly, and they were also failing to inform patients about the bigger picture—clinical trials, for instance—but families too were not doing enough research. 

This lack of awareness means that the immigrant community leans injudiciously towards holistic medicine and is vulnerable to the sharing of misinformation.

Two or three years ago, Luisa learned that a friend was going to take his boy overseas for an unapproved treatment, and she had to warn him of the immense danger this involved. “He was putting his son’s life on the line because of his desperation and the unchecked sharing of misinformation… People are selling everything they have in the hope of a cure”. 

Luisa has translated articles and shared them through social media to warn families of these dangers and give them accurate information. To assist her efforts to educate the community, Luisa has networked with doctors and experts who “really know Spanish, rather than just a word or two”. Luisa illustrates the importance of this by pointing out the many varieties of Spanish within the community that the Akari Foundation serves. She has people on her team from Argentina, Bolivia, Colombia and Mexico to cater for all speakers of the language. 

The Akari Ambassadors’ Program is envisaged as the main pillar of the foundation’s education efforts. The foundation has prepared backpacks containing comprehensive information about DMD. As soon as a family learns of their diagnosis and contacts the foundation, they will receive a backpack, and an ambassador will contact them to offer support. The ambassadors are proactive parents who have already lived with the condition for three or four years. They will connect those families with other families and signpost the support available. 

Campaigning for legislative changes in Mexico and the US

Luisa’s vision for change extends beyond the needs of the Hispanic community in the United States. In Luisa’s view far too little is being done to meet the needs of people with DMD in Mexico, the country of her birth: “To give them a wheelchair is not enough. They are living in the shadows.”

In an effort to bring light to those shadows, the Akari Foundation is working hard to change Mexican legislation on newborn screening and to have all muscular dystrophies recognised as rare diseases, so that affected families can apply for benefits. 

This is vital, Luisa says, because without this support families can really struggle. “Seven or eight different supplements are recommended for children with DMD, depending on the child and doctor concerned. Say you have to give them seven monthly—it soon adds up. Some cost 30 dollars or more, so you’re talking at least 100 to 150 dollars a month.” But supplements are just one of the out-of-pocket expenses when a family member is affected by DMD. Luisa adds “you have to pay not only for therapy but for getting to it too—in a taxi if you don’t have a car. That might be another 20 dollars a week, and in Mexico, that’s a lot of money!”

Luisa is also building partnerships with other organisations, such as the EveryLife Foundation and the Parent Project Muscular Dystrophy (PPMD), to add her voice to legislative efforts in the United States. She has noticed that progress in the US has an indirect benefit for Mexicans too. For instance, if medicines are approved stateside by the FDA, pharma companies still “go through a lot of hoops, but they are able to do things more easily in Mexico”.

Future hopes

One of Luisa’s major hopes is for a sea change in the tiresome attitudes she and her community face.  “Some people believe that the Hispanic community comes to the United States to take, take, take. But we work so hard!” Contrary to popular belief and messaging in the media, “undocumented families cannot have access to free stuff. You need a social security number or a driver’s licence.” Living in Texas as an undocumented mother, Luisa certainly did not have that privilege and could not access benefits—even as the mother of a documented child who was sick— and this created considerable challenges during the many years before she gained her Green Card.

Funding is another area where Luisa hopes for progress. Funds are a constant challenge for the foundation, but it still works creatively to find solutions for people within the community with bigger needs. 

“If we’re not able to provide something, because we don’t yet have the funds, we connect with organisations that want to partner with us and help us. They might not speak Spanish, but that’s what we’re here for. To translate and be that liaison between families and organisations.”


Contact The Akari Foundation

The Akari Foundation was founded by Luisa Leal in 2017. Its mission today is to empower the Hispanic immigrant community in the United States

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