170 Miles for SMS 💜

170 miles. 17 minutes. £10.70. One very important chromosome.

In September, the six of us — Benjamin, Thomas, Nicola, Simon, Ruth and Kevin — are taking on a challenge to collectively complete 170 miles to raise money and awareness for Smith-Magenis Syndrome (SMS).

We'll be walking, running, swimming, cycling and using any other method we can think of to reach our 170-mile target during the month!

Why 17?

Smith-Magenis Syndrome is a rare genetic condition caused by a deletion or change involving chromosome 17. So we're putting the number 17 at the heart of our challenge:

💜 170 miles — our family challenge

💜 17 minutes — a challenge for anyone who wants to join us

💜 £10.70 — our suggested donation

A little about our son, Benjamin

Benjamin is now 8 years old and was diagnosed with Smith-Magenis Syndrome in January 2025, when he was 6.

Interestingly, the diagnosis came several years after his original genetic testing. When Ben was around 18 months old, we were told that his genetic results didn't give us an answer at the time, but that our details would be kept and that advances in genetic testing might mean that something could be identified in the future.

Almost four years later, we finally got that answer: Smith-Magenis Syndrome.

The diagnosis didn't suddenly change who Ben was or what our family was doing, but it gave us something incredibly valuable — an explanation, a name for what we'd been trying to understand, and somewhere to turn.

That somewhere was the SMS Foundation UK.

Since Ben's diagnosis, we've found the Foundation incredibly helpful for information, research, support and, perhaps most importantly, connecting us with a wider understanding of SMS. We wanted to do something to give something back, and this seemed like a fun way for our family to do that.

Want to join us?

We're asking our friends, family and anyone else who would like to get involved to take part in 17 Minutes for SMS.

During September, give us 17 minutes of your time to do something active — walk, run, swim, cycle, dance, walk the dog... whatever you fancy!

If you can, we'd also love you to make a suggested donation of £10.70 to the SMS Foundation UK.

You can do one, the other, or both. There's no pressure and no minimum donation or activity required. We'd simply love as many people as possible to spend 17 minutes thinking about and raising awareness of Smith-Magenis Syndrome.

Every donation will help the SMS Foundation UK with the work that matters so much to families like ours — supporting families, raising awareness and funding research into SMS.

And if you see us out and about during September, you'll hopefully spot our family working towards those 170 miles!

Thank you for supporting us, supporting the SMS Foundation UK, and helping us put SMS on the map. 💜

170 miles. 17 minutes. £10.70.

Let's do this!

A little from SMS Foundation UK:

Help us to ensure every person with Smith-Magenis Syndrome shall have a fulfilling life within a supportive and understanding community.

The Smith-Magenis Syndrome (SMS) Foundation UK is at the heart of our community. We will be the first point of contact for those seeking information and support. Nobody should ever feel isolated or alone. We value every person affected by this genetic disorder and shall empower them to reach their full potential as respected members of society.

Connecting Families – Raising Awareness – Building Futures