hello everyone

I say this not just as a dad, but as one of many fathers whose lives were changed forever the day our child was diagnosed with Spinal Muscular Atrophy, or SMA.

Before I say anything else, I want you to think about this for a moment.

Think about the day your child was born.

The first cry.

The first time you held them.

The promises you made in your own head — to protect them, to fight for them, to give them the best life possible.

Now imagine being told that your child has Spinal Muscular Atrophy.

A condition you may never have heard of.

A condition that weakens their muscles day by day.

A condition that threatens their ability to sit, to crawl, to walk, to breathe.

That moment changes you forever.

As dads, we are meant to fix things.

We are meant to make it better.

But SMA teaches you very quickly how powerless you can feel — watching your child struggle, knowing that earlier diagnosis could have changed everything.

And that is the hardest part.

Because SMA can be treated.

But timing is everything.

Right now, babies across Great Britain are still being born without routine newborn screening for SMA. That means families often receive a diagnosis only after symptoms appear — after irreversible damage has already been done.

That knowledge stays with you.

It keeps you awake at night.

It sits heavy in your chest.

Because no parent should ever have to ask,

“What if we’d known sooner?”

Families living with SMA fight battles every single day that most people never see.

They fight for:

• Equipment that allows their child to move

• Homes that need expensive adaptations just so daily life is possible

• Wheelchairs that cost more than cars

• Support that makes the difference between coping and breaking

This is not about luxury.

This is about survival.

This is about dignity.

This is about giving our children the chance to live their lives fully.

SMA is a rare, genetic, life-limiting neuromuscular condition. It weakens muscles, affects movement, breathing, and swallowing, and changes every part of daily life — not just for the child, but for the entire family. It is something no parent is ever prepared for, and something no child should ever have to face without every possible chance.

Yet right now, across Great Britain, babies are still being born without routine newborn screening for SMA.

That means diagnosis often comes too late — after symptoms appear, after damage has already been done, and after precious time has been lost. Time that can never be given back.

And that is why we are here.

On the 29th of august 2026, a group of us dads — ordinary men, united by extraordinary children — will be taking on an extraordinary challenge.

We will be climbing Ben Nevis, the highest mountain in the UK.

This isn’t about proving how tough we are.

This isn’t about adventure.

And this certainly isn’t about us.

We are not athletes.

We are not mountaineers.

We are fathers.

And every step up that mountain will represent what our children face every day.

Every ache, every breath, every moment where giving up would be easier — but never an option.

Our children climb mountains before they even leave their beds.

They show bravery in ways that humble us.

They smile through hospital appointments.

They laugh while facing challenges that would break most adults.

So we will climb for them.

Because they cannot do this themselves.

They cannot shout loud enough to be heard.They cannot demand change.

This climb is about giving our children a voice.

It’s about standing up and saying loudly and clearly that early diagnosis saves lives, that newborn screening matters, and that families living with SMA deserve support, dignity, and hope.

Families affected by SMA rely heavily on charity funding just to live everyday life.

That funding helps with:

• Adaptations to homes so children can move safely and independently

• Specialist wheelchairs that grow with them

• Equipment that allows them to attend school, join their friends, and live fully

• Grants that help families survive the financial strain that comes with round-the-clock care

Without this support, families are left struggling — emotionally, physically, and financially.

And no family should have to fight that battle alone.

As dads, our instinct is simple.

We protect.

We fight.

We show up.

And when the path is steep, when the weather turns, and when the climb feels impossible — we keep going, because our children do this every single day of their lives.

They face challenges far greater than a mountain.

They face them with courage, with resilience, and with smiles that remind us exactly why this fight matters.

So today, we are calling out to dads across Great Britain.

If you are a dad…

If you believe every child deserves the best possible start in life…

If you believe no baby should miss out on treatment simply because screening isn’t in place…

Join us.

Join us on this mammoth challenge.

Climb with us.

Stand with us.

Help us raise awareness.

Help us raise vital funds.

Help us fight for newborn screening across the UK.

Whether you climb the mountain, donate, share our story, or simply talk about SMA — you are helping to change lives.

We are doing this because our children cannot climb Ben Nevis.

They cannot fight policymakers.

They cannot fundraise for the equipment they need.

So we will do it for them.

We will climb for their futures.

We will speak until we are heard.

We will fight until change happens.

Because when it comes to our kids, there is nothing we won’t do.

Because when we stand together, our voices become impossible to ignore.

This climb is not about reaching the summit.

It’s about making sure our children are seen.

It’s about fighting for their right to a future.

It’s about keeping the promises we made the day they were born.

We will walk into the cold.

We will face the wind.

We will take on that mountain with their names in our hearts.

Thank you.

Established for almost 40 years, SMA UK are a charity that supports, campaigns and advocates so that everyone affected by Spinal Muscular Atrophy can access the best care, services and treatments, and benefit from continued research. We offer adults, young people, parents, relatives and friends emotional support, practical advice and guidance from our experienced team and provide reliable health and social care information about SMA. We also provide and distribute free multisensory toy packs for infants who are diagnosed with SMA.