Our Puerto Rico-based organization, Leadership in Health Foundation – Myasthenia Gravis, was born from a deeply personal experience: the miracle of life of my brother, Carlos Rivera Valle.
The name of our foundation carries a special meaning. Before being diagnosed with myasthenia gravis, Carlos authored a book titled Leadership: Past, Present and Future, which explores leadership throughout history and highlights influential leaders from the United States and around the world.
Inspired by his passion for service and leadership, we chose the name Leadership in Health Foundation as a tribute to his vision and legacy.
A crisis changes life forever
In 2023, our family’s life changed forever. Carlos began experiencing symptoms that were initially mistaken for other illnesses. At a time when COVID-19 was still a major concern, many believed his symptoms were related to the virus. However, the reality was different. Carlos was suffering from myasthenia gravis, a rare neuromuscular disease that remains unknown to many people, including – at times – even to healthcare professionals.
Because of the lack of awareness and delayed diagnosis, Carlos experienced multiple life-threatening crises. His condition deteriorated to the point where he required a feeding tube (PEG), mechanical ventilation, and a tracheostomy. He remained hospitalized for more than sixty days. Those were some of the most difficult moments our family has ever faced.
At one point, the hospital and health insurance provider had already approved a home ventilator, believing that long-term ventilatory support would be necessary. The future seemed uncertain. Yet God placed angels in our path.
One of those angels was Dr. Roberto Sotolongo, Carlos’s childhood friend and an internal medicine physician in Miami. Thanks to his clinical expertise, extensive experience with myasthenia gravis, and unwavering support, he guided our family through critical decisions and helped us navigate one of the most challenging periods of our lives.
We are also deeply grateful to Dr. Alfredo Pérez Canabal, Carlos’s neurologist, and Dr. Jesús Román, pulmonologist, whose dedication and expertise played a fundamental role in his recovery. Through their care, Carlos was able to overcome his severe crises and gradually regain his quality of life.
“I don’t want others to go through what I have”
Today, Carlos is stable. He can walk, eat, speak, and enjoy time with his loved ones. Every day is a blessing and a testament to faith, perseverance, and hope.
During one of his hospital stays, Carlos shared a dream that would ultimately become our mission. He told me, “If I get better, I want to create a foundation. I don’t want other patients to go through everything I have gone through.”
Those words remained in my heart. I prayed that God would help us turn that dream into reality. From that moment forward, our mission became clear: to educate, raise awareness, promote early diagnosis, and advocate for appropriate treatment so that other patients and families would not have to endure the same struggles we experienced.
A commitment to hope, education, and advocacy
As part of that commitment, we helped to promote Puerto Rico’s Law 133-2025, which officially designates June as Myasthenia Gravis Awareness Month in Puerto Rico. This historic legislation represents a significant step toward increasing awareness, education, and understanding of the disease across the island.
We strongly believe in continuing medical education, the development of clinical guidelines, and the early recognition of symptoms to ensure timely diagnosis and proper treatment. We also believe that patients should always be evaluated and treated by neurologists who specialize in neuromuscular disorders whenever possible.
We are encouraged by the emergence of innovative therapies and new treatment options for people living with myasthenia gravis. These medical advances bring renewed hope to patients and families around the world and offer the promise of improved quality of life.
Our family extends our heartfelt gratitude to Puerto Rico Governor Jennifer González Colón, Secretary of Health Dr. Víctor Ramos Otero, Senate President Thomas Rivera Schatz, and Representative José “Pichi” Torres Zamora, author of Law 133-2025, for their commitment to the myasthenia gravis community. Their support made it possible for Puerto Rico to establish this important awareness initiative and recognize the needs of patients living with this condition.
Awareness and support for the MG community
As part of these efforts, iconic government buildings, including the Capitol and the Department of Health, were illuminated in teal, the color representing myasthenia gravis, during June. These symbolic gestures help bring visibility to a condition that has remained largely invisible.
Most importantly, we want every patient living with myasthenia gravis to know that they are heroes. They have faced extraordinary challenges while battling a disease that many people do not fully understand. Today, awareness is growing, treatments are advancing, and more organizations and individuals are joining this mission.
To every patient and family, we say: never lose faith. Hope is stronger than fear. Prayers are heard, miracles happen, and together we will continue working toward a future where myasthenia gravis is recognized early, treated appropriately, and understood by all.
Damarys Rivera
Leadership in Health Myasthenia Gravis Foundation