500km for Freddie: Raising Awareness for Rare Pituitary Conditions

Our Story

This April, our family—me, my husband, and our daughter—are taking on a massive challenge. We are walking and running a combined 500km to raise vital funds for The Pituitary Foundation.

Why we are doing this

In June 2025, our world was turned upside down when our son, Freddie, was diagnosed with a series of rare pituitary issues. Freddie lives with:

Secondary Adrenal Insufficiency: His body cannot produce cortisol, the essential "stress hormone" needed for survival.

AVP Deficiency (Diabetes Insipidus): A rare disorder that affects his body's water balance.

Growth Hormone Deficiency: Affecting more than just his height, but his overall energy and development.

Understanding the Rarity

We often find that people struggle to understand Freddie’s journey because his conditions are so rare. To put it into perspective:

Adrenal Insufficiency is a life-threatening condition; without his daily "replacement" medication, Freddie’s body would simply shut down.

AVP Deficiency is so rare it affects only about 1 in 25,000 people.

Because these conditions are "invisible," people don't see the constant monitoring, the emergency injection kits we must carry everywhere, or the "crash" Freddie experiences when his levels are low.

He is a true medical warrior, navigating a world that isn't built for his specific needs.

The Goal

The Pituitary Foundation is a lifeline for the rare disease community. They provide the specialist information and support that even many doctors aren't fully aware of.

500km in 30 days is a huge mountain for us to climb, but we’re doing it to honor Freddie’s resilience and to make sure no other family has to face these rare diagnoses alone.

Please support us if you can—every donation helps us shine a light on these rare conditions.

Walk for Pituitary Awareness – Take on the Challenge!

This April, take part in our movement challenge and help support people living with pituitary conditions.

Pituitary conditions can affect energy, mobility, mental health and everyday life. That’s why this challenge is about moving in a way that works for you.

Whether you walk, cycle, row, stretch, swim, or take things slowly, your participation helps fund trusted information, specialist help, psychological support and vital services for people affected by pituitary conditions across the UK.

Your movement. Your pace. Your support makes a difference and helps to fund our vital work.