Our current campaigns

In recent years, there has been great progress towards new treatments for some muscle wasting conditions.

We’ve helped to make sure that people can access recent treatments for five different muscle wasting conditions.

But this is just the beginning. We’re campaigning for access to nine new treatments and a system that’s ready for the treatments that come next. We won’t stop here.

Read more here.

The cost of living crisis isn’t over. For disabled people who face greater energy and water costs, it’s a particularly hard time.

Hundreds of people with muscle wasting conditions have told us that the cost of living crisis is a priority for them. In 2024, over half of people living with muscle wasting conditions felt financially insecure. That is unacceptable.

The UK Government is currently looking into the Personal Independence Payment (PIP), and it’s likely to be reformed in the coming years. They will also probably make other changes to the welfare and employment system, like Access to Work.

In Scotland, the Adult Disability Payment (ADP) has replaced PIP. Last year, an Independent Review into ADP recommended changes the Scottish Government could make. We’re keeping a close eye to see which changes are taken forward.

We’re already talking to key decision makers about how they can better help people with muscle wasting conditions feel financially secure and break down barriers to employment.

But with changes to the benefits system being considered now, it’s vital that decision-makers hear directly from our community.

Sign our petition calling for benefits systems that work for everyone living with a muscle wasting condition. Change is possible. And it starts with us acting today.

We’re calling for people living with muscle wasting conditions to get faster, better, and equitable access to healthcare services and treatments.

Across the UK, access to good healthcare services for people with muscle wasting conditions is a postcode lottery. While some people receive excellent care, others face barriers to accessing services and managing their health.

Improving the performance of health systems begins with recognising what isn’t working and learning from what is. And that’s what we’re campaigning for. We want everyone to benefit from the best care possible, no matter where in the UK they are.

Delayed diagnosis means that some babies are going months without receiving life-changing treatments for spinal muscular atrophy (SMA).

Without prompt medical intervention, SMA symptoms progress quickly and life expectancy is estimated at less than two years. Babies who do survive can’t walk, and the majority are reliant on tube feeding and ventilation support. It doesn’t have to be this way.

The evidence is convincing, and the case is clear: we need newborn screening for SMA. Scotland will soon start doing this. England, Northern Ireland and Wales need to catch up.

Newborn screening for SMA is already used around the world, early treatment is often lifesaving, and it will save the NHS money in the long-term.

We need change now.

Read more here.