Living well with SMA

Assistive equipment

Adaptive Stroller

An adaptive stroller offers a lighter and more portable alternative to wheelchairs…

Assistive equipment

Cough assist machine

A cough assist machine helps to produce a more productive cough…

Assistive equipment

Pulse oximeter

A pulse oximeter measures the percentage of oxygen in the blood…

In the past I compared myself to an able-bodied standard of perfection, it seems so ridiculous now.

By Cara, March 2022

Assistive equipment

Bilevel positive airway pressure (BiPAP) machine

A BiPAP machine provides a high volume of air into the lungs during inhalation…

Assistive equipment

Wheelchair

There are many different types of wheelchairs, both manual and power…

Assistive equipment

Car bed

A car bed allows individuals to lie down more comfortably while traveling in a car…

Assistive equipment

Stander

Individuals who are unable to stand independently can be helped into a standing position through a stander…

Home modifications

Changes to the structure or fittings of your home can improve safety and comfort…

SMA and NDIS

What is the NDIS?

The National Disability Insurance Scheme (NDIS) provides supports and services...

SMA and NDIS

What does the NDIS fund?

The NDIS is designed to fund supports and services, including…

SMA and NDIS

Steps and advice for applying to the NDIS

Accessing the NDIS requires an application and supporting documentation…

SMA and school

Which school is right for my child with SMA?

Children with disability can choose to go to a specialist, public or private school...

SMA and school

What does school look like for SMA in Australia?

In Australia, almost all children with disability go to school…

SMA and school

Tips for choosing a school for your child with SMA

Choosing a school for children with SMA involves some research…

SMA and school

Strategies for transitioning to secondary school

Children with SMA will most likely need extra support…

SMA and school

NDIS and schooling

The NDIS may fund reasonable and necessary supports…

SMA and work

Tips to help find employment

Having SMA shouldn't be a barrier to employment...

SMA and work

Developing experience and skills for the workplace

Experience in practical, social, and organisational skills...

SMA and work

Practicing job interviewing

Handy tips for developing job interviewing skills…

There are many challenges we face living with SMA, and I am always looking for ways to make life a little easier.

By Ellie, March 2022

Hey awesome person reading this I am Michaela. I’m 25 and I have Spinal Muscular Atrophy type 2.

By Michaela, March 2022

Living with SMA my whole life, I am passionate about the future progression and advocacy by and for those of us with lived experience.

By Cara, March 2022

As a mother and grandmother, I am passionate about prioritising my family life.

By Juanita, March 2022

I don't want to talk about my disabliity all the time, there is a lot more to me than that.

By Ellie, March 2022

If people were able to understand just a tiny bit about what a day in the life looks like for someone like me

By Michaela, March 2022

Living with SMA has fostered many qualities within me, such as respect for others, compassion, patience, resilience, kindness, appreciation, and a great sense of humour.

By Juanita, March 2022

Activities that can sustain important elements of movement

By Cara, March 2022

Many of use say, that growing up we never had any experience with connecting to our community

By Cara, March 2022

SMA stories

A practical guide to relaxation

Wellness

This guide aims to inspire you to start or restart your relaxation practice…

Living with SMA, I don't see my life as being hard, I just have to work harder

By Cara, March 2022

Struggling with everyday stress?

I am not defined by my SMA, I am defined by my passion for animals and the environment – that's what drives me

By Ellie, March 2022

Make the most of your time outside.

Do you enjoy going to restaurants but worry how accessible they will be?

SMA stories

SMA genetic carrier screening to become reimbursed under Medicare

Out and about

Genetic carrier screening is presently available in Australia as a privately funded service…

SMA stories

Caring for carers

Relationships

Carers can sometimes let their own needs take a back seat…

SMA stories

Being your own advocate

Relationships

"Although I haven't really had a healthcare team…" – Juanita

SMA stories

Strengthening your ‘You’ve got this’ muscle!

Personal stories

"Hey hey, I hope you are all doing well. It's me, Michaela…" – Michaela

SMA stories

Addressing inequality and accessibility

Daily life

"I'm tired of the incorrect perceptions of people with disabilities…" – Ellie

SMA stories

The extra complexity of SMA

Daily life

Consider the extra effort required to live with SMA every day

SMA stories

You and your providers

Relationships

Two #SMArtTips for you and your providers

SMA stories

Keep on moving

Wellness

"Wellness and movement is different for everybody…" – Cara

SMA stories

Get involved in the community

Out and about

"I would advise to uild a support network of people with like-minded ideas…" – Ellie

SMA stories

Chopsticks, plungers and more

Around the home

Four #SMArtTips to help think SMArt aruond the home

SMA stories

Can-do attitude

Personal stories

"No matter what, I tackle every challenge with a can-do attitude…" – Michaela

SMA stories

Meeting others with SMA

Personal stories

"I am the only biological child of my Mum and Dad…" – Michaela

Resources to live well with SMA