Enlace Distrofia Muscular Duchenne Becker is the only non-profit organization providing optimal medical, emotional and psychological care for DMD/BMD patients and their families in Northern Mexico. Since 2000, the organization supports families in the states of Chihuahua and Nuevo León. For the last twenty years, Enlace has been developing their learnings into a model to serve the community. So far, over 165 young boys and men affected by Duchenne and Becker Muscular Dystrophy and their families received support.
Providing a wide range of specialized care
Graciela, aunt of a Duchenne boy and strategic director of the organization explains the situation in Mexico: “No private or public hospital in Mexico provides the specialized care that is needed by our patients. That’s why our services include access to healthcare professionals and specialized medical care such as Neurology, Cardiology, Pulmonary, Orthopedics, Physical Therapy, Endocrinology, Nutrition and Physiology; medications, X-Rays, laboratory work, surgeries, genetic testing and diagnosis. We also provide our families with psychological and end-of-life counseling services, and medical equipment such as electric wheelchairs, ventilators and transportation from and to medical appointments.
Access to care and treatment
When Lalo, a nephew of Graciela was diagnosed with Duchenne Muscular Dystrophy, she found it difficult to find doctors or information needed to take care of him. Graciela explains: “We investigated and contacted those who had experience in treating this condition, and searched for ways to transfer these learnings so children in Mexico would also benefit from this. Our main objective is to have DMD/BMD recognized to provide the opportunity for treatment and a better quality of life. Since Enlace was founded, the average lifespan of children with DMD has increased by approximately 8 years. This, to me, is our greatest achievement.”
Overcoming lack of economic resources
One of the biggest challenges the organization faces is the lack of economic resources that most families are having. This contributes to an inability to start or continue treatment. “Eighty-seven percent of the patients that we have will not get medical attention unless it’s provided by our organization” she explains. “This is the reason we established a team of 8 full-time trained non-profit professionals, 8 specialized doctors and 12 Board of Directors that regularly meets and provides both program and financial oversight for the community.”
Connecting to the global community
Graciela is glad that Enlace is an eligible member of the World Duchenne Organization, that is now counting 45 member patient organizations. “For several years we have been connected with the World Duchenne Organization to commemorate the World Duchenne Awareness Day. For all of us, it’s of utmost importance to belong to this global organization. It provides us the international perspective, and the ability to achieve better support while being at the forefront of up-to-date information on Duchenne and Becker muscular dystrophy.”