Zak is 25 years old and living with myotubular myopathy (MTM), a rare genetic neuromuscular disorder characterized by muscle weakness that can range from mild to very profound and debilitating. MTM causes weakness in muscles that are involved in swallowing and breathing, and patients often have severe respiratory distress and require ventilation. Despite the challenges it brings, Zak is determined not to let his condition destroy his quality of life. He loves being with friends and looks forward to spending more time socializing with them, going out to restaurants and having a beer. Some may consider him as a true modern hero for doing what he likes despite the limitations of MTM, but he swears he is just a regular person, even joking that he ‘just wants to be boring, an average guy.’
Unfortunately, Zak’s advanced stage of disease often prevents him from doing these basic things with fatigue and chest infections being barriers, not to mention the physical barriers of actually getting into somewhere easily. There are currently no approved therapies to treat Zak’s condition, but Zak is hopeful there will someday provide therapeutic options available that could help. Zak is convinced that even minor improvements in muscle power, would have a positive effect on his quality of life.