It was about eight years into our diagnosis I decided I had to do more. I was nervous because I did not have a life sciences background. I was having a successful career in aerospace. But it wasn’t enough for me to sit at home and Google or to go to the doctor and always be twisting their arm for more information and more therapies to try. I wanted to be closer to the solution.
It was an unstoppable feeling. There was something tugging inside me that knew I could be used to help; not just my daughter but beyond our family’s journey. I truly didn’t know what it was. On a complete leap of faith, I came to Roche. When I walked through the doors of Roche on my first day, I was walking into the unknown. But for me that was the same thing with the diagnosis; it was also walking into a different unknown.
When my daughter Bella was 18 months old, we received a diagnosis of Angelman syndrome. It’s an understatement to say things were a blur. We mourned the loss of a child we thought he had, and yet we welcomed this beautiful, vibrant little girl. We were devastated, I didn’t know how I would get past it. But knowledge is power, and we started on a journey to discover what we could do to help our little girl. We assumed that treatment for this rare neurogenetic disorder would not be discovered in Bella’s lifetime.
Within my first few weeks after joining Roche, I attended an event where patient advocates came to our site and shared their story. And that experience was so moving, so beautiful, so relatable, and it was in that moment that I realised I am in the right place. I need to be here. I belong here and we are all working towards something bigger and serving the families and patients that rely on our science and research; and medicines. That’s the feeling I hope and I want all our employees to feel.
In light of Rare Disease Day, I want all of us to remember that when we show up everyday to work, we’re here to make change. We all recognise that there are most definitely challenges and setbacks. But we’re here to make a difference; we’re here to put our heads together and join forces with our wider society. It’s the time to co-create and collaborate in order to focus on bringing more options and treatments to families like my own.
And that to me is my motivating factor. I come to work every day to make that impact. In the end it might not be the daily schedule of what I’m doing that is related to Angelman syndrome or directly supporting its progress, but if I can influence and help understand, even the smallest things can advance that big picture.