Sugar Free September raises money and awareness for people with muscular dystrophy

In Australia, one in 1,000 people has a genetic neuromuscular condition that leads to progressive deterioration of their muscle function. There is no known cure, and it can affect people at different stages of their lives, from infancy to adulthood. George, five, has been living with this condition since he was born.

George’s father, Nathan, says they did not understand what the condition was when he was born.
“When George was born it was clear that something was not right, he was very floppy, half of his face wasn’t working, his arm was not working and he had to go straight into special care because his breathing was so fast.”

The family attributed it to a traumatic delivery. After many tests and months of waiting, the family learned the diagnosis. “A genetic test diagnosed George with a neuromuscular condition called Nemaline Myopathy, a condition that impacts all the skeletal muscles, making them very weak and causing him great difficulty with moving, breathing, and swallowing”, says Nathan.

What is Muscular Dystrophy?

Muscular Dystrophy (MD) is a lifelong condition with no known cure. There are over 30 types of neuromuscular diseases, commonly referred to as muscular dystrophies. The disease causes muscles to weaken and deteriorate. MD results from a breakdown between specific nerve cells and muscles.

The most common type is Duchenne muscular dystrophy (DMD), which affects boys as young as two years old. It is rare for a person to survive beyond their 20s. MD is an inherited genetic disease that can only be detected through very expensive prenatal testing.

George’s parents did not know where to get support. Connecting with Muscular Dystrophy NSW (MDNSW) put them in touch with many other families who understood what they were going through. “The community is so generous, not only with their advice but in their actions, with one family even sending George an old power wheelchair so he could get involved in Powerchair Football,” says Nathan.

Learn more about George’s story:

Today, George’s weeks are full of appointments with amazing therapists and regular trips to Westmead Children’s Hospital to be reviewed by specialists. He continues to work hard to keep his muscles moving, recently achieving the milestone of being able to get up from the floor unassisted for the first time.

Going Sugar Free for MD

Nathan and his wife are now active members of the MDNSW community and are raising awareness about neuromuscular conditions with a much wider audience by participating in the Sugar Free September campaign. Sugar Free September is asking Australians to cut out refined and added sugar for one month and raise much-needed awareness and funds to help support people living with muscular dystrophy.

Australians consume an average of 14-16 teaspoons of added sugar each day. That’s equivalent to almost three bars of chocolate every day”, points out Charlotte Sangster, Chief Executive Officer, MNDNSW. “Most of us are unaware of just how much sugar we are actually consuming on a daily basis, and with the impact of COVID-19 lockdowns, we may have been eating a bit more than normal and exercising less. Sugar Free September is your chance to challenge yourself, improve your health and give “sweet” opportunities to kids and adults living with neuromuscular conditions so they can build strength and reach their potential.”

All funds raised going towards MDNSW’s programs and services that include camps, retreats, and online peer support programs. So, get involved and go #SugarFreeforMD.