At Entrada, we recognize that disparities in many forms add to the challenges for people living with serious diseases, including Duchenne muscular dystrophy (Duchenne). In an effort to uplift communities who are often overlooked by today’s healthcare system, we launched Entrada DREAMS.
DREAMS is a competitive annual grants program designed to fund efforts that better identify, understand and reach the entire Duchenne community.
The impact of DREAMS has already been brought to life by the incredible organizations selected as the first grant recipients in 2023. Now more than a year later, we’re shining a light on their efforts to support all members of the Duchenne community and their progress made since receiving the inaugural grant.
About The Akari Foundation
The Akari Foundation is a non-profit organization dedicated to educating and empowering the Hispanic community about rare diseases, with a focus on Duchenne. By providing resources, awareness, advocacy and education to families entirely in Spanish, The Akari Foundation aims to build a future where Hispanic families have the support needed to navigate Duchenne and other rare diseases.
Luisa Leal, Founder and CEO of The Akari Foundation, draws on her experience as a single mother and immigrant to address the challenges of navigating the healthcare system in an unfamiliar environment without the proper support. Luisa’s eldest daughter was born with a congenital anomaly in her right hand and her youngest had a disease in her right eye which brought her close to losing her eyesight several times.
After spending years trying to secure quality care for her daughters, it became clear to Luisa that families like hers faced many hurdles in the hospital system. This realization was further reinforced when she met her former partner's children, two young boys with Duchenne, whose treatment was incredibly difficult to manage due to the lack of resources on the disease that were catered to Spanish-speaking families.
Aiming to unite, educate, empower and equip families like hers, Luisa founded The Akari Foundation.
A collective effort for change
With the help of the Entrada DREAMS Grant, The Akari Foundation has made tremendous strides in their advocacy and education efforts, while collaborating with other organizations in the Duchenne and rare disease space. Luisa and her team have been able to leverage the funding to connect with more Spanish speaking families – providing access to education, information and meaningful community connections.
Uplifting the Hispanic community’s voice is another important part of The Akari Foundation’s focus. “We work with organizations like EveryLife Foundation for Rare Diseases, Texas Rare Alliance and Parent Project Muscular Dystrophy to create the representation in legislation, and educate pharma, families and doctors to have equity and inclusion for our community in all these areas,” said Luisa.
Partnering with other like-minded organizations has also been key to ensuring families are always connected with the support and resources they need. While The Akari Foundation doesn’t specialize in providing patients with mobility and assistive devices, for example, the team is connected to other organizations with this capacity.
So even if The Akari Foundation doesn’t have the internal infrastructure to execute a given request, families can still be confident that they will be connected with an organization that can help.
“We are trying to support in any way we can,” said Luisa. “We try to find the resources that they need.”
To make sure families are never left in the dark and have all the information needed to make informed decisions about their loved one’s care, The Akari Foundation often works closely with families and their care teams to serve as a trusted translator.
“If the organization doesn’t have anyone who speaks Spanish, we are that liaison in between them,” said Luisa. “Even though we don’t focus on interpretation, we often work with the organizations and the families to help them get what they need.”
Recognizing that the need for support is not limited to the continental U.S., The Akari Foundation has expanded in recent years to work with families based in Puerto Rico, Mexico and Latin America.
In addition to expanding geographically, The Akari Foundation has also started to support other patient populations that extend beyond Duchenne.
“Our main focus is always going to be Duchenne, but we have expanded to the rare diseases because there is so much need out there,” said Luisa.
There’s more to be done
While The Akari Foundation has left an immeasurable impact on countless families affected by Duchenne and other rare diseases, Luisa emphasized that there is always more to be done, and that with the help of grant programs like DREAMS, she has no plans to slow down.
“This work doesn’t stop – it continues,” said Luisa.
For anyone looking to learn more about The Akari Foundation and support its efforts to guide the Hispanic community through complicated care journeys, visit The Akari Foundation’s website.
Interested in applying for a future DREAMS Grant? Please visit the Entrada DREAMS Grant Program webpage where you can find applications for this year’s program.
