Osteogenesis Imperfecta (OI) is a rare disease, which leaves the medical world guessing, despite over 500,000 people suffering worldwide.
The disease takes many shapes and forms but all patients have one thing in common – their skeleton is fragile and fractures easily. Even a simple movement such a coughing or sneezing may cause their bones to break. That immediately explains the nickname ‘brittlebones’. Some people experience as many as 100 fractures in a lifetime. Imagine the impact on their lives and that of their families.
Care 4 Brittlebones Foundation
The Care4Brittlebones foundation was started in 2012, with the aim to raise funds for research to improve the quality of life for people suffering from OI. They have two advisory boards consisting of medical specialists, who all dedicate their knowledge and time free of charge.
I learnt about Brittlebones and their foundation through Dagmar Mekking, a former colleague working for Shell who have a lovely daughter who has OI. We both left Shell around the same time. I started by business Lollapalooza and she is now fully dedicated to running the foundation. Have a look at their website to read more about the great things they do: www.care4brittlebones.org
The personal stories on the website taught me one thing: their breakable bones come with an unbreakable spirit! Take Stijn for example – his story has been an inspiration during my endless hours of training and I trust they will keep me going during my New York Marathon adventure.
