I am quite involved with a number of charities working on rare diseases. While one could think that such charities are currently a secondary concern, the opposite is closer to the truth for at least two reasons. First, people affected by rare diseases are often in at-risk groups for COVID-19, and rely on these charities for specialist information and support, as is the case for people affected by spinal muscular atrophy (SMA); second, charities operate with very small margins, and a financial crisis compounded by the inability to hold community fundraising events or open their shops if they have them, are a massive combined blow. Many charities may fold.

Spinal Muscular Atrophy UK is the charity funding our UK SMA Research Consortium (https://smauk.org.uk/developing-treatments-for-all-with-sma) for spinal muscular atrophy, an awful inherited disease. The charity has been greatly supportive of my lab for quite a few years. I have joined their Ride Scorpion bike ride several years, for their benefit. I was hoping to join them again in 2020, but COVID-19 put paid to that.

To support Spinal Muscular Atrophy UK, during lockdown I went out on my own on “Coronavirus cycle rides”. I completed 30 day-rides, from 23 to 145 Km-long, an average of 45 Km per ride at about 20 Km/h, for a total of 1,360 Km. This would be equivalent to riding from London to Spain across France. See a few pics here, and many more in Instagram at rjyanezmunoz.

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