Be part of this global day of generosity 
by supporting young people like Kobe

Generous donations from supporters like you have helped the muscular dystrophy community navigate through this challenging year and helped Muscular Dystrophy NSW provide quality services and programs when kids, adults and families need them the most. 

Kobe would like to share his story with you and show you how your donation makes an impact

"I think we can all agree that 2021 wasn’t a great year. Covid 19 really limited our movements, brought periods of isolation, and fears for the future.

But that’s a lot like every other year for someone like me with muscular dystrophy. Still, I have a lot to be grateful for."

"My name is Kobe, I’m 20 years old and live in a small rural area called Jaspers Brush, 2 hours south of Sydney. I don't know anyone who lives close by with muscular dystrophy, so when I joined Muscular Dystrophy NSW’s (MDNSW) Summer Camp in 2013 it opened up my world."

"Initially, it was daunting to leave my family, but camp quickly became one of the only places where everything felt normal.

At camp I noticed most kids didn’t even talk about living with MD because it was something we all shared, so we didn’t need to explain ourselves. This was a time I could just have fun, and the incredible memories and best friends kept me going back every year."

"Now I attend MDNSW's Young Adults Weekend. This year's Weekend was a great chance to travel, learn some independent living skills and eat some cheese from the Smelly Cheese Shop, which wasn’t even that smelly! The best part was being surrounded by my friends, mates who just get each other.

When we’re together it’s like our situation doesn’t matter; we play games and just be ourselves."

"Throughout the pandemic it’s been difficult to stay connected. Which made me grateful that MDNSW created an online group called the Power Hour for all of us guys in power wheelchairs to catch up virtually every fortnight.

 It’s a chance for people in the same boat to hang out, just the guys, and have some light-hearted fun…including a few bad jokes! It’s also a place where we feel safe to share our feelings."

"Having MDNSW adapt their programs online was especially important to me as I live in a rural area and worry about missing out. Power Hour also motivated my mates to show up, and we even had a friend living in Europe dial in! During the toughest lockdowns we asked to increase our fortnightly sessions to weekly, and it became the time I look forward to the most.

My family and I benefit enormously from the programs offered by MDNSW, and I know many others do too."

How your donation makes a difference

• Empowerment: Ensure children with muscular dystrophy can attend overnight camps to experience teamwork, try new challenges and build confidence, plus make friends and have fun! 

• Independence: Support a young person with muscular dystrophy to learn independent living skills, get out into the community and strengthen peer relationships at our Young Adults Weekends.  

• Connection: Help connect peers living with muscular dystrophy to share lived experience, problem solve and cultivate community through our Peer Connect groups like Power Hour. 

About GivingTuesday and MDNSW Christmas Appeal

GivingTuesday focuses on one simple thing: generosity. This year we join over 60 countries world-wide to celebrate this global day of generosity together on Tuesday 30 November 2021.

Muscular Dystrophy NSW is inviting you to celebrate GivingTuesday as a special 'double your impact' donation day for MDNSW's Christmas Appeal 2021.

By donating on GivingTuesday you'll double your impact for the muscular dystrophy community, thanks to a generous gift match that will double every donation up to $10,000!

What is 
Muscular Dystrophy ?

Muscular Dystrophy is a neuromuscular, genetic disorder which results in the progressive deterioration of muscle strength and function. Muscular Dystrophy is the name of one of many different neuromuscular conditions.

Neuromuscular conditions can affect people at different stages of their lives and onset of symptoms can occur from birth to adulthood, depending on the condition.

The rate of progression and pattern of inheritance also varies depending on the condition and the individual.

For more information about what we do and the services we provide for the muscular dystrophy community see out website mdnsw.org.au.