An update from Emily Reuben OBE and Alex Johnson OBE, Founders of Duchenne UK, on Rare Disease Day
Today is special. Not just because it’s Rare Disease Day but because it’s also the 29th February, a leap year, a BONUS day that we all get given only once in every four years.
So, what are you going to do with your one precious extra day, in this one precious life of yours?
Alex and I are spending it in our fight for treatments for Duchenne muscular dystrophy (DMD) – to fight for those extra precious days for our sons and all the boys and rare girls around the world living with Duchenne.
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Today we are hosting a series of collaborative meetings: the first to address the work we are doing in harnessing technology to help disability. And the second is to continue to drive forward our amazing DMD Care UK programme, to ensure boys get the best care, no matter where they live.
And today – in honour of Rare Disease Day – we are pledging £1 million, along with our incredible partner charities, Joining Jack and the Duchenne Research Fund to fund the next three years of DMD Care UK. And to fully integrate it into our work on the DMD Hub, our clinical trial network, and our research programmes.
Help us and donate to DMD Care UK.
Today is also time for reflection: 12 years ago, Alex and I knew nothing of DMD, of medical research, of fundraising, or of the challenges in drug development.
Yet here we are today, £27 million later, and with a world vastly different, from the one that we entered when our sons were diagnosed.
Tomorrow, we start our first-ever conference, New Horizons, where we bring together families, industry, and clinicians, to discuss the best care, and the exciting research happening in Duchenne today.
And we are announcing a big new area of work for us: DUCHENNE UK Data – a state of the art data collection platform that will launch next year with the aim of enabling participation in clinical trials, driving better clinical care through access to guidance, education and patient insights from their own data, support the development and evaluation of new treatments, and track disease progression.
There’s never been a more exciting time for the DMD community. Treatments are coming, and we will never, ever stop fighting.
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THANK YOU FOR READING.