Help Me Shine a Light on CdLS

I’m asking people to donate when they come for a portrait or headshot session at my studio

or simply because they want to pay it forward.

I’m fundraising for the CdLS Foundation UK & Ireland because I believe nobody dealing with Cornelia de Lange Syndrome (CdLS) should walk this path alone.

A close friend of mine writes a blog called My Kid Loves Broccoli about life with her daughter Hannah, who has CdLS. Her writing shows the daily realities. The laughter, the struggles, the strength, and it opened my eyes to just how important support and awareness really are.

Families like Hannah’s deserve to know they’re not alone.

Cornelia de Lange Syndrome (CdLS) is a rare genetic condition, affecting only 1 in 10,000–30,000 individuals. It can bring challenges with growth, learning, behaviour, communication, and serious medical complications. No two cases are the same. Most people have never even heard of it, which is why shining a light on it matters so much.

By giving, you’re not just donating money. You’re offering:

A lifeline for families needing information and connection

Support for research that can lead to better treatments

Hope that tragedy doesn’t have to be silent or ignored

Thank you for standing alongside me, Hannah, her family, and every family touched by CdLS.

At the moment I am running a "Cool Stool" project. if you would like to be involved, then check out johnbentley.co.uk/coolstool