At Entrada, we recognize that disparities in their many forms add challenges for people living with serious diseases, including Duchenne muscular dystrophy (Duchenne). We launched Entrada DREAMS, an annual competitive grants program, to fund efforts within the Duchenne community that better identify, understand and reach those who are currently underrepresented and underserved.
Since the program was launched in 2023, the impact of DREAMS has been brought to life by the multiple incredible organizations selected as recipients. We recently sat down with the 2024 recipients to help shine a light on their efforts to bridge healthcare disparities impacting the Duchenne community and their progress since receiving the grant.
About Walking Strong
Walking Strong is a nonprofit organization that seeks to empower individuals affected by Duchenne and their families by providing comprehensive support, funding cutting-edge scientific research and building a strong and compassionate community.
Valerie Pappas Llauro and her husband Jorge Llauro, founded Walking Strong after their son Alexander was diagnosed with Duchenne at five years old. Aiming to turn adversity into service, Valerie and Jorge established the foundation in 2014 to get closer to a cure and raise awareness about the disease. Now more than ten years later, Walking Strong has assisted 400 families impacted by Duchenne and has no plans to slow down.
Expanding access to critical support
The 2024 DREAMS Grant has provided critical funding for Walking Strong to expand the reach of its services to more families, including with its Assistance Program and Mindset Coaching Program.
Throughout the last year, Walking Strong has continued to advance its Assistance Program, designed to provide families with vital resources that are often difficult to access because they’re rarely covered by insurance. Walking Strong aims to see all families impacted by Duchenne equipped with things they need to thrive, without having to pay thousands for medical equipment. This includes providing medical equipment, service dogs, lifts, ramps, travel aid and help with purchasing accessible vans, as well as career training for young adults.
“We recently helped a single mom who has two teenage boys with Duchenne,” said Valerie Pappas Llauro, Co-founder and Executive Director of Walking Strong. “She was completely drowning because they had no form of transportation, so we bought her an accessible van. That has been absolutely life changing.”
Five years ago, Walking Strong expanded its services to include the Duchenne Mindset Coach Program. Through Valerie’s personal experience working with a mindset coach, she realized the importance of having a supportive, confidential space to learn practical tools to navigate the unique challenges of Duchenne. Unlike traditional therapy – which is an additional cost burden to many families – the Duchenne Mindset Coach Program provides free one-on-one, virtual mental wellness and life coaching to people living with Duchenne, as well as their parents and siblings.
Walking Strong’s mindset coaches are educated on the unique challenges of Duchenne and are deeply attuned to the emotional and developmental needs of the community. With this knowledge, the coaching staff are able to leverage highly individualized coaching frameworks that empower families through their unique journeys with Duchenne. This year, Walking Strong has been able to provide mindset coaching to 28 families.
“The Mindset Coaching program has truly blossomed, and we now have two coaches working full-time with our families,” said Valerie. “The most beautiful thing is that there have been two boys who had such an incredible coaching experience that they decided they’d like to pursue coaching as a career.”
Walking Strong recently funded a six-month coaching course for a 20-year-old young man with Duchenne who discovered his passion for mindset coaching and felt called to help other members of his community.
“Through the Mindset Coaching program, we’ve given him an education and a career, and it’s bettering his life,” said Valerie. “Communicating with these young boys directly as a young man with Duchenne is completely invaluable.”
Valerie aims to build on the success of the program and ensure that every family impacted by Duchenne has access to mindset coaching, especially at diagnosis. With the help of grant programs like DREAMS, Walking Strong is on its way to realizing this goal.
“Grants for us are our life force – we could not sustain without them. The DREAMS Grant and companies like Entrada are allowing us to do so much for families with Duchenne.”
Looking Ahead
Building on the impact of the Assistance and Mindset Coaching programs, Valerie is tapping into her Hollywood background and producing a documentary that follows the story of the LAFC, the renowned power soccer team on which her son Alexander plays, which is sponsored by the professional team.
“Soccer Brothers” (tentative title) is a powerful short documentary that follows a remarkable power soccer team composed of teenage boys living with Duchenne. These young athletes are not only defying the odds but also rewriting the history books in adaptive sports. Through determination, heart and an unbreakable bond, they rise above their physical limitations and become champions on and off the court.
“Our film is an inspirational sports movie about overcoming great adversity,” said Valerie. “Duchenne is the underscore."
The film is directed by Jenni Gold, a Directors Guild of America (DGA) member and wheelchair user with spinal muscular atrophy (SMA), is produced by Walking Strong, and will be released in 2026. The hopes are to gain exposure at multiple film festivals, be awarded and ultimately achieve the goal of raising awareness of Duchenne and supporting Walking Strong’s mission to help even more families nationwide.
“We want all Duchenne families to know that they do not walk this journey alone,” said Valerie. “We are walking strong with them.”
Get involved
For anyone looking to learn more about Walking Strong and support its efforts to empower the Duchenne community to thrive, visit the Walking Strong 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.
