SMA Awareness Month : ‘Every piece of the puzzle: celebrating the SMA community’

We’re kicking off SMA Awareness Month with reflections from the Chief Executives of SMA UK and Muscular Dystrophy UK. As we launch this year’s campaign, Every Piece of the Puzzle, they look back on the progress our community has made, celebrate the people who have made it possible, and reflect on the work still to come. Together, their messages remind us that every breakthrough is built through collective effort, and that every person has a part to play in shaping the future of the SMA community.

A Message from Giles Lomax, Chief Executive of SMA UK

As Chief Executive of SMA UK, and as the father of twins living with SMA type 2, I often reflect on just how extraordinary the last decade has been for our community. 

Sometimes I compare our journey to climbing Mount Everest. 

For many years, securing access to life changing treatments felt like reaching the summit. It required determination, resilience and the collective efforts of hundreds of people. Families shared deeply personal stories, adults living with SMA challenged perceptions, researchers pushed the science forward, clinicians championed change, supporters raised vital funds, and campaigners refused to give up. Together, we reached what once seemed impossible. 

Then, just as we stood on that summit, another appeared before us. 

The campaign for newborn screening became the next Everest. Once again, it demanded years of evidence, collaboration, persistence and belief that every baby deserved the best possible start in life. Today, as newborn screening becomes a reality, we have reached another remarkable milestone one that will change the lives of generations to come. 

But anyone who has climbed a mountain knows that reaching the summit is never the end of the journey. 

The view from the top allows you to see what comes next. 

Our next challenge is to ensure that every person affected by SMA, whether they were diagnosed decades ago or through newborn screening in the years ahead, has the opportunity to live a full, independent and meaningful life. We must continue to strengthen the community that has brought us this far while welcoming the new families who will join it. 

What makes me most proud is that no one climbed these mountains alone. Every breakthrough has been achieved because hundreds of people each carried a piece of the load. Every family, every researcher, every clinician, every campaigner, every supporter, every volunteer and every partner organisation has helped us take another step upwards. 

This campaign celebrates those people. It celebrates every piece of the puzzle, every hand that helped us climb, and every person who continues to shape the future of the SMA community.

As we celebrate how far we have come, we should also remember that the greatest achievements are never the work of one individual or one organisation. They are the result of a community climbing together. 

A Message from Andy Fletcher, Chief Executive of Muscular Dystrophy UK

For many people living with a muscle wasting condition like SMA, being told ‘there are no treatments’ has long been the reality. But that picture is beginning to change.

Over the last ten years, there has been great progress and there are now treatments available on the NHS for five muscle wasting conditions, including SMA. That can mean slowing progression, maintaining independence, or improving day-to-day quality of life.

In a decade, we’ve gone from zero to ten treatments for muscle wasting conditions, as well as the progress made with newborn screening for SMA. This is a huge achievement and has only been possible because of the whole community. It gives us hope for the future but it’s just the beginning.

Each research project funded helps us learn more about muscle wasting conditions and every treatment approval shows that progress is possible. And most importantly, all the individuals and families who have campaigned, shared their stories, or fundraised, have made a huge difference.

This progress belongs to everyone affected by muscle wasting conditions. Together, our community, clinicians, researchers, and partner organisations, can continue to improve diagnosis, fund research into new treatments, and ensure everyone gets the care and support they need –  when and where they need it.

Find out how you can get involved in SMA Awareness Month with SMA UK here!