A project from the heart—working together to achieve big things
This is a project that hits close to home, and so we’re taking time for special people and their stories. People who have touched our hearts. Because what ultimately defines the essence of any of us?
Initiative Einzigartig (‘The Unique Initiative’) is a fundraising project for the treatment and therapy of those afflicted with rare ‘brittle bone’ disease. The project was brought to life by Lena—the best friend and maid-of-honor for Marie-Luise—whose lovely son Theo was born in December 2020 with this rare illness.
To support Theo and many others and to drive research into this rare disease, we are donating 5 euros for each bottle sold of MOMENTUM directly to this worthwhile cause.
Lena and her son Theo, a survivor of rare brittle bone disease
What is the story behind this disease?
There are few genetic defects with as colorful a name as ‘glass bone disease,’ as it’s known in German. The proper medical term is “Osteogenesis Imperfecta.” Despite the names, the sufferer’s bones aren’t actually made of glass nor is their skeleton imperfectly formed. While it is true is that the primary symptom is broken bones, “Osteogenesis Imperfecta” is in fact an issue related to the connective tissues. It affects not just the bones, but also muscles, tendons, ligaments, and cartilage, i.e., the entire set of connective tissues. There have sadly been few substantial therapeutic breakthroughs in the past 20 years. Which makes any effort to draw attention to this fight all the more important.
Theo—tiny but mighty
For the past 11 months, this little beam of sunshine has kept his parents busy. One doctor’s appointment comes on top of the next. He has suffered 19 bone breaks in the first 6 months alone. In some cases simply because he tensed his muscles. And there’s no end in sight. Despite the diagnosis, Theo keeps smiling, reminding us every day just how much there is to fight for. INITIATIVE EINZIGARTIG hopes to show that being unique is also something to be proud of.
An initiative from the heart
The initiative works with a global network of experts exploring treatments, therapy and even potential cures. But funding is tight. Which is why it’s so crucial that donors give generously. The funds flow into selected projects through the Care4BrittleBones foundation.
Initiative Einzigartig supports the research into rare brittle bone disease.