Rare Disease Day takes place on the last day of February each year to raise awareness amongst decision makers and the general public about rare diseases and their impact upon patients lives. Around 1 in 20 of us will live with a rare disease at some point in our lives, so it’s vital to make the world more aware of them.
Down By The Riverside Festival chose to work with Ataxia UK as it’s a cause that’s very close to their collective hearts. Their marketing partners, WestCoastCo, work closely with the charity as spinocerebellar ataxia is a condition which runs in the family of their managing director, Arran.
“For people with conditions like ataxia, a lot of the struggle comes from having to explain themselves and their symptoms time and time again”, Arran explains, “it can be lonely and frustrating to live with a rare disease, particularly with something like ataxia where many of the symptoms can make a person appear drunk. That’s a hard one to explain.”
As well as raising money for Ataxia UK, the festival aims to spread awareness about the condition itself, and provide a signpost to local support for those affected by it.
"We have a fantastic platform here to raise awareness about this rare condition. By raising money, we can fund research, and by raising awareness we can hopefully help people see that theyre not alone"
Steve Lawrence, Festival Organiser
Festival organiser Steve Lawrence said, “we have a fantastic platform here to raise awareness about this rare condition. By raising money, we can fund research, and by raising awareness, we can hopefully help people see that they’re not alone.”
Ataxia is a name given to a group of conditions that affect speech, balance and coordination. There are many types of ataxia that affect people in different ways, and many people with ataxia will go undiagnosed for years. For people with this condition, there is no cure, but there is support and an excellent sense of community from centres such as Lancaster’s Neuro DropIn.
“Neuro DropIn supports everyone in the immediate area of Lancaster & wider region affected by a Neurological condition. Neuro DropIn and those using our Centre recognise the value of services we offer such as Neuro Physio, Massage Therapy, Mindfulness and Wellbeing, Tai Chi etc to help with management of Ataxia and associated conditions,” explains centre manager Kelly Kane.
In Preston, a support group lead by Arran from WestCoastCo meets on the last Tuesday of every month at 6.30pm in Grimshaw Street Community Centre to discuss doctors, “miracle products” and their personal lives. It’s a small community of people who don’t have to explain themselves to one another, which is often a rare gift for those of us with rare diseases.
Down By The Riverside Festival takes place on the 1st and 2nd of June 2018 in Dolphinholme, Lancaster, and they will be welcoming representatives from Ataxia UK all weekend. To find out more, visit their website, and enter ATAXIAUK at checkout for 20% off ticket prices and to donate a portion of the cost to Ataxia UK.
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