About the Freya Foundation
The Freya Foundation began with one family, one little girl, and a diagnosis no one could explain. Today, it is a close‑knit community of families, clinicians and supporters determined that no one has to face PDH deficiency alone.
From one family’s shock to a shared community
When Freya was diagnosed with PDH deficiency just before her first birthday, her parents, Kelly and Dave, found themselves in a world with very few answers and even less support. They were left to piece together information, chase appointments, and carry the emotional weight of a rare diagnosis largely on their own.
They set up The Freya Foundation so other families would not have to go through that same isolation. What began as a way to raise awareness for Freya’s condition has grown into the only known UK charity dedicated specifically to PDH deficiency – a place where families can find understanding, practical information and genuine connection.
The Freya Foundation supports, informs and advocates for children and families affected by PDH deficiency, so they can access the best possible care and the best chance at a positive life.
The Freya Foundation is the first and only UK charity focused solely on PDH deficiency, combining lived family experience with specialist medical partnerships.
Families and clinicians describe the foundation as a trusted first port of call: small enough to know people by name, experienced enough to help them navigate complex treatment decisions, research and day‑to‑day life with PDH.
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Behind our foundation
We're a small team of parents, trustees, volunteers and clinicians who give their time, energy and expertise to keep families supported and research moving forward.
Our founders
Kelly and Dave helped establish The Freya Foundation after their daughter Freya’s diagnosis. Alongside juggling family life, Kelly leads the charity’s support for newly diagnosed families and takes on ambitious fundraising challenges – from running multiple marathons to pulling planes – to keep research and services going.
Our trustees
A small board of trustees oversees the charity’s governance and direction, ensuring donations are used responsibly to support families and fund meaningful research.
Our volunteers
Volunteers help with everything from events and admin to family weekends and awareness campaigns, keeping the charity personal, responsive and down‑to‑earth.
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Our medical advisors
The foundation works with a medical board of metabolic and neurology specialists who advise on information, research and best practice in PDH deficiency. Families benefit from this expertise through clearer guidance and more coordinated care.
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Ready to connect?
Reaching out to a community for the first time takes courage. We promise to meet you with warmth, understanding and no judgment – because we've all been where you are or are standing beside someone who is.
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