Zak sends us a message

Meet Zak: smart, joyful, and spirited, he wants people to see the person behind the disease. For him, a handicap should never be a reason to see someone as different. ‘I focus on life, not on the disease’.

Zak is 23 years old and suffering from CNM. He lives in Devon, in the UK, and he is determined not to let the disease destroy his quality of life. Zak loves being with friends and he 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 his condition, 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. There are currently no approved therapies to treat Zak’s condition.  Most patients are given treatment for their symptoms, which often don’t provide relief, because the root cause of the disease cannot be targeted.  Zak is convinced that even minor improvements in muscle power can have a positive effect on his quality of life.  

What would Zak’s world look like if he had any improvement in his muscle? 

  • It could mean the difference between having to use a headrest on a wheelchair or not
  • Being able to roll over in bed without needing help from care givers, or being able to smile
  • It could be the difference between having to find quiet locations to have conversations with friends or happily shouting across a table in a noisy pub!
  • It might mean not having to make sure a restaurant’s tables are exactly the right height to lean comfortably on while eating, and being able to order the steak off the menu rather than the softest option
  • Or for some people even the ability to chew and swallow at all
  • At best, it might allow some people to stand or walk again

Any improvement – ‘anything is everything’ – no matter how relatively small it may seem to people unaffected by neuromuscular disorders, can and will greatly boost quality of life, both physically and mentally.
Dynacure is committed to patients like Zak to give them a therapeutic option that will target their unique and challenging disease.