This year, I am running the New York City Marathon for my godson, Frederik, who passed away last year.

Frederik was born with POLG mitochondrial disease, a rare genetic disorder that affects the body’s ability to produce energy. Alongside his parents, Frederik founded The POLG Foundation in 2021. Its mission is to support and accelerate research into effective treatments and, ultimately, a cure for POLG mitochondrial disorders.

POLG disease is devastating. It robs the body’s cells of energy, causing progressive dysfunction and failure across multiple organs and systems, including the brain, nerves, liver, intestines, muscles, swallowing and vision. One way to understand it is as a faulty battery: never fully recharging, constantly depleted, and eventually losing power.

Like many rare diseases, POLG can be extremely difficult to recognise, even for doctors. For families, that can mean years of uncertainty, late diagnosis, and very limited treatment options. Frederik and his family know the reality of this disease with extraordinary courage, and The POLG Foundation exists to change that reality for others.

Sir Douglas Turnbull, an eminent professor and member of The POLG Foundation Scientific Advisory Board, has said:

“I have looked after literally hundreds of patients with mitochondrial disease, and there is little doubt that of all mitochondrial diseases, POLG deficiency is the worst. It is so relentlessly progressive, attacking so many different systems with sadly the same conclusion.”

Any donation, large or small, will help fund research, raise awareness, and bring hope to families affected by this terrible disease.

Thank you for supporting me, Frederik, his family, and The POLG Foundation.

Henry Yates