Authored by Cello Health, now part of Lumanity
I have worked on multiple Rare Disease projects throughout my career in the Biopharmaceutical and Consulting industry but I am still blown away by the strength, bravery and hope of those impacted by these rare and devastating conditions.
Stories make things a lot more vivid, they are authentic and form an emotional connection with each reader. If you know the person telling the story and their story is personal, told with truth and vulnerability, then the story is even more powerful.
This happened to me recently. I found myself listening to a deeply moving and personal story from Rich Horgan, the founder of the non-profit biotech, Cure Rare Disease which I sit on as a board member.
Rich calmly walked us through their Christmas and New Year, vividly describing the impact that a fall has had on his brother Terry and the whole family as they continue to battle with Duchenne Muscular Dystrophy.
Rich has now written down his story and I encourage you to read it. Here is an excerpt:
“More doctors arrived…and an EMT team ready to resuscitate if needed. Seeing those paddles and Terry’s frail semi-conscious body was forever burned into my mind. But you can’t show weakness or fear because, even semi-conscious, Terry was aware and judging the situation based on our reactions. All I could think is this isn’t happening, we haven’t fought and suffered to lose now. Not when we are so close. Not with a custom drug just around the corner, hold on, Terry, please hold on. Don’t let go, please. Praying to whoever may be listening to take me instead”
Stories like this remind us why we work in the industry we do, they remind us to listen, and love and care for those around us. They remind us how fragile life can be, and how we should all aim to make a difference. We can and are starting to make a meaningful difference.
I am proud to be part of the Cure Rare Disease journey as we pioneer the development of customised therapeutics for rare, genetic diseases. I am thankful to Cello Health for supporting me in this and for their ongoing support of another key rare disease UK charity, Findacure. But also wanted to encourage all my colleagues and co-workers and friends, my clients and wider network to continue working hard towards better treatments and better solutions. The insights we generate are meaningful, the strategic choices we make are critical and the way we support communication of powerful of real people’s stories is vital in getting the message out there.
Looking forward, I hope for a celebration, to tell happier stories of transformation and success. For now, and as we head towards Rare Disease Day 2020, let’s share stories and raise awareness around what it means to live with a Rare Disease.
Going home we felt different, a certain seriousness had descended upon us after this. A realization that we could prepare for years yet lose the war in a moment. A certain vulnerability that we have so little power, but only the sheer strength of stubbornness and refusal to give up to get us through
https://www.cureraredisease.org/blog/in-a-world-unequipped-for-rare-disease