Family and Carers


Being a family member of a person living with muscular dystrophy or other neuromuscular conditions can be challenging and rewarding at the same time. Caring for a family member living with disability can affect the whole family and many people experience stress and isolation.

It’s really helpful to connect to others in similar circumstances to you that share your worries and successes. Informal networks provide a great opportunity to learn of new ways to cope and help you support your loved one to live the life they choose.

We have a number of events and programs for families including:

Siblings Day Out

Our Peer Connect program runs small events and gatherings for people with disability and their families.

Siblings Day Out is for kids (6-16 years) who have a brother or sister with a neuromuscular condition. It’s a fun, activity-filled day for kids to get to know other kids with a similar family situation.

Check our Events & Programs page to see when the next Siblings day is, or Contact us to find out.

Mums' Weekend Retreats

We all know that we need to take care of ourselves so that we have the energy to look after others. But how often do we take the time to do that?

The Mums’ Weekend Retreat is a great way for busy mums to get away with a truly supportive and understanding group of women.


Peer Connect

Our Peer Connect program runs small events and gatherings for people with disability and their families. These events include:

  • Siblings Day Out
  • Mums’ Retreats
  • Sydney MD gatherings
  • SMArties meetings


Neuromuscular Information & Research Seminar

Everyone has questions about their, or their loved one’s condition, the latest research and treatments. In an annual event, we bring people with questions together with people with answers. Speakers include medical and allied health professionals, as well as people with lived experience of neuromuscular conditions.


See our Events page for what is coming up.

Other ways family members choose to connect with the MDNSW community is by representing as board members, participating in consultation days, surveys and even volunteering.

Check out The Peer Collective for stories and information from people in the MDNSW community covering a range of topics that might be of interest for parents, other family members and carers.

And The Loop is a great new resource for the neuromuscular community, featuring stories, condition information and a forum.

Contact us for more information on any of our events and programs.