Living with a condition that others may know little about can sometimes feel isolating. For people and families affected by Charcot-Marie-Tooth disease, having a place to meet others who understand can make an important difference.

Creating connection for people living with CMT

Charcot-Marie-Tooth disease is an inherited peripheral neuropathy that affects the nerves in the arms, hands, legs and feet. People living with CMT can experience muscle weakness, changes in sensation, difficulties with balance and mobility, and challenges with fine motor skills. Pain and fatigue can also be part of living with the condition.

For CMT WA, peer connection is an important part of responding to these experiences.

The group’s vision is to create a connected and supportive community where individuals and families affected by CMT feel safe, included and valued. At the heart of this is a desire to reduce isolation and create meaningful connections between people who share an understanding of life with CMT.

A support group shaped by its members

While CMT support groups have operated in WA at different times since the late 1980s, the current CMT WA Planning Committee was established in July 2024 following a call for members. Five members came together to develop a group agreement and Terms of Reference to help guide the group into the future.

Today, the CMT WA Support Group meets quarterly, with activities and guest speakers chosen in response to the interests and requests of members. This gives the community a say in what they would like to learn about and discuss.

The group also helps connect people with useful information and resources, including healthcare contacts, advocacy services, assistive technology and other support organisations. Through its connection with CMT Association Australia and other organisations, members can also stay informed about broader CMT resources, research and opportunities.

Informing, connecting and supporting

CMT WA describes its purpose simply as “informing, connecting and supporting individuals and families with CMT in Western Australia.”

It’s a purpose reflected in the group’s focus on creating a sustainable community where people affected by CMT can connect with others, access useful information and feel part of something larger.

Interested in connecting with CMT WA?

The group meets quarterly and welcomes individuals and families affected by CMT in Western Australia.

Find out more through CMT Association Australia:
CMT Association Australia