This year, we’re taking on a Year of Challenges for Rupert, my youngest son, who lives with Primary Ciliary Dyskinesia (PCD). PCD is a rare, genetic disease affecting about 1 in 15,000 people in the UK, caused by abnormal motile cilia, tiny hairs in the airways that help keep lungs, sinuses, ears, and other parts of the body clear.

There is currently NO CURE so research into better treatments and management is vital.

People with PCD can experience recurrent respiratory infections, chronic coughs, sinus problems, ear infections, and sometimes fertility issues. Because it’s rare and symptoms can overlap with other conditions, diagnosis is often delayed, making early awareness and research crucial.

To support Rupert and the PCD community, I’m taking on three major challenges this year:

HYROX in Manchester in January

London Marathon in April

50 km in Kenya in November

Treatment focuses on managing symptoms and preventing complications, including regular physiotherapy to clear airways, medications for infections, and careful monitoring of lung health.

These challenges are all about raising awareness, supporting research, and improving understanding, diagnosis, and treatment of PCD. Every step, every kilometre is for Rupert and for everyone affected by this rare condition.