Berlin Marathon for The ED Society

Help Me Support the Ectodermal Dysplasia Society

On Sunday, 29th September 2024, I’ll be running the Berlin Marathon to raise funds for the Ectodermal Dysplasia (ED) Society, a charity that has become close to our hearts.

Our journey began on 3rd July 2021, when we welcomed our beautiful twins, Grace and Henry. Both were healthy, lively, and fun-loving. But as Grace grew, we noticed differences in her development compared to Henry. Grace had sparse hair, missing and pointy teeth, and severe eczema. Concerned, we sought medical advice and were eventually referred to genetic specialists at Oxford’s John Radcliffe Hospital.

After an intensive period of genetic testing involving Grace, my wife, and myself, doctors informed us that Grace most likely has X-Linked Hypohydrotic Ectodermal Dysplasia, a rare genetic condition that affects only a tiny number of children worldwide. In fact, many doctors never encounter this condition in their entire careers.

The Ectodermal Dysplasia Society has been an invaluable resource for our family, providing support and advice on managing day-to-day challenges. Their work is crucial in raising awareness of this rare condition, connecting families with medical professionals, and helping to improve the quality of life for those affected.

By running the Berlin Marathon, I aim to raise funds to help the ED Society continue their amazing work. Your donations will directly support families like ours, and contribute to greater awareness and understanding of this condition.

Please consider supporting me and this incredible charity. Together, we can make a difference for Grace and others living with Ectodermal Dysplasia.

Thank you so much for your support!

More information about Ectodermal Dysplasia Society: The Ectodermal Dysplasia Society provides information, advice and support to those affected by Ectodermal Dysplasia. The ED Society promotes the education of the medical profession and general public, supports research, produces regular newsletters, liaises with the Charity's Medical Advisory Board, supports members in negotiations for financial aid/other services, encourages a network for mutual support and maintains website.