What Can You Do?

We, you, he or she or they

Duchenne muscular dystrophy (DMD) is a rare X-linked genetic disease which affects approximately one in every 3,500 to 5,000 males worldwide. DMD is caused because of a mutation in the muscle dystrophin gene leading to severe progressive muscle loss and function.

Our Story

What does a child with Duchenne muscular dystrophy (DMD) experience in life?

Muscle weakness becomes increasingly noticeable between the ages of 3 and 5 and wheelchair use generally occurs in the very early teenage years. During adolescence respiratory and cardiac muscles weaken and cognitive dysfunction emerge leading to serious, life-threatening complications.

Just think about it for a second!

What does it mean when a child dies because they can’t afford a very expensive treatment?

How would you feel if it happened to you?

DMD can be detected with a genetic test before having a child or with a CK (Creatine Kinase) test after birth.

Families may become aware of DMD based on the tests performed at the hospital they go to after having their baby.

However, due to hospital conditions, technology and inadequate tests where families live, many parents only notice their children showing signs of DMD when they are 3-4 years old.

Can you feel the mother and father’s emotions after this diagnosis?

Many mothers and fathers first begin the journey of discovering what this disease is.

Those who read old sources about Duchenne Muscular Dystrophy are devastated by the feeling that there is no cure for this disease.

Families who know English and find accurate (up-to-date) resources experience brief happiness when they see that there are various treatments for DMD and that new treatment studies are currently underway.

The reason for this short-term happiness to end is that the treatment costs have reached astronomical figures. There are not many options for DMD anyway, and the average cost of these treatments is 3 million US dollars.

Treatment Costs Are the Most Difficult Problem to Solve

3 Million US Dollars is not an amount that can be found easily and without stress.

“Except for your relatives (sometimes even they) no one cares about your inextricable problem.”

You Are Often Left Alone!

But There Are Still Good People Out There!

What Can You Do?

We, you, he or she or they

What Can You Do?

Our Story

What does a child with Duchenne muscular dystrophy (DMD) experience in life?

Just think about it for a second!

How would you feel if it happened to you?

DMD can be detected with a genetic test before having a child or with a CK (Creatine Kinase) test after birth.

Families may become aware of DMD based on the tests performed at the hospital they go to after having their baby.

However, due to hospital conditions, technology and inadequate tests where families live, many parents only notice their children showing signs of DMD when they are 3-4 years old.

Can you feel the mother and father’s emotions after this diagnosis?

Many mothers and fathers first begin the journey of discovering what this disease is.

Those who read old sources about Duchenne Muscular Dystrophy are devastated by the feeling that there is no cure for this disease.

Families who know English and find accurate (up-to-date) resources experience brief happiness when they see that there are various treatments for DMD and that new treatment studies are currently underway.

The reason for this short-term happiness to end is that the treatment costs have reached astronomical figures. There are not many options for DMD anyway, and the average cost of these treatments is 3 million US dollars.

Treatment Costs Are the Most Difficult Problem to Solve

3 Million US Dollars is not an amount that can be found easily and without stress.

“Except for your relatives (sometimes even they) no one cares about your inextricable problem.”

You Are Often Left Alone!

But There Are Still Good People Out There!

What Can You Do?

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