#WeWontRest until we improve the lives of people living with SMA and stop their disease progression (Guest blog)
27.08.20
In my role at Biogen, I work closely with spinal muscular atrophy (SMA) patient advocacy groups from across Europe. In SMA, it’s a very special experience. We learn a lot from our patients. For me, their voice is as important as the healthcare professionals we speak to because they are the experts in their disease; they live through their experience every day and many will continue to for the rest of their lives.
There are several different types of SMA, which start at different ages. It is a rare, genetic, neuromuscular disease that causes loss of motor neurons in the spinal cord and lower brain stem, resulting in muscle wastage and weakness, which worsens with age. People with SMA can lose the ability to walk and have difficulty performing basic functions that we take for granted in life, such as breathing and swallowing.
I have had the chance to meet some incredibly inspiring adults with SMA who have been severely affected by the disease. Some patients are only able to move one finger yet have still managed to create beautiful paintings, author and publish books, gain university degrees and run their own companies or charities. For me, this really touches my heart. When you see these things, it really is quite easy to stay motivated to find a way to help patients preserve any possible function, to enable them to keep doing what they love.
As someone who studied science and trained as a microbiologist, I have always thought to myself, ‘how can I help patients with what I’ve learned and what I know?’ I once considered being a physician but then I became a scientist, and I am so glad that this was the path I chose. Today I can see how the science transforms into hope for these patients.
At Biogen, we work in a cross-functional way to orchestrate our support for patients across disease areas and all feel such a strong sense of passion and commitment to serving these patient communities. We are constantly researching and innovating, collaborating with universities, groups of scientists and patient organisations, to address the unmet needs of patients with rare diseases. The culture and the focus of Biogen strongly resonates with my personal values because the patient really is always at the centre of everything we do – this is not a theory, this is a reality.
#WeWontRest until we improve the lives of people living with SMA and stop their disease progression.
