Rare Revolution: Giving a voice to young people living with rare disease
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Rare Revolution Magazine is unique. Dedicated to giving rare disease sufferers and their families a voice and building them a community. It could easily be mistaken for a corporate enterprise, but is, in fact, a home-grown non-profit borne out of small village in Aberdeenshire.
Created by two sisters, themselves members of a rare disease family, it is now one of the most vibrant and trusted portals for rare disease parties to come together in a safe, respectful and informed community.
With their efforts going from strength to strength, they were approached by the Wellcome Genome Campus in Cambridge to present their story to some of the leading minds in genomics when they addressed the October, ‘Bench to Boardroom’ lecture.
“It seems strange to hear ourselves referred to as entrepreneurs and to be here now talking to people who are experts in their fields. Maybe we have a bit of imposter syndrome? But therein lies the crux of what we’ll talk about today, it's the experience and knowledge of the patients themselves and those closest to them which is so often not fully utilised.”
Nicola Miller and Rebecca Stewart established the Teddington Trust charity in 2012, in the wake of Nicola’s son’s diagnosis with Xeroderma Pigmentosum (XP) as a way of both communicating the condition to her son and raising awareness for others around them.
The condition is an autosomal recessive disorder, in which cells lack the ability to repair the damage caused by ultraviolet (UV) light. This can lead to sufferers developing multiple basal cell carcinomas and other dangerous skin malignancies that commonly affect the patient at a young age, forming metastatic malignant melanoma and squamous cell carcinoma - sadly, the most common causes of death amongst those afflicted.
Little Ted is the star of the Teddington Trust books and stories, which focus on educating those affected by the condition and normalising it for children struggling with it. Nicola’s Little Ted books have won a British Medical Association award for their accessible, well designed and clinically balanced patient relevant information.
The two sisters went on to launch their magazine, Rare Revolution, in the Autumn of 2016. “We were motivated to start the magazine because we had a hit a few hurdles in communicating through the charity,” said Rebecca Stewart. “It's difficult, with such personal stories about such rare conditions, to stop them becoming a ‘woe is me’ human interest story. We had received interest from the mainstream press before but it was harnessed in a negative light.
“At first we imagined a glorified newsletter. We initially built it up from the community on our Facebook page to create a multi-stakeholder environment.” Said Rebecca Stewart. “That community was one of the most unexpected things about this, but has now become one of the most powerful. We received one video message from a reader about how it had affected him and it was such a raw message. We knew then that we were on the right track.”
The success they had seen, both in the magazine itself and the surrounding community, inspired them to start planning for the first edition of the magazine focused specifically on the experiences of children and young people. These groups, tragically, make up half of the world’s rare disease sufferers. They decided to call it the Rare Youth Project.
“We started working on the a version of the magazine that was not only focused on children with rare disease, but also planned, researched and written by children with rare diseases.” Said Rebecca.
“The kids have chosen their jobs and have set the editorial direction,” said Nicola Miller. “They have chosen the interviews, and not soft topics, but big issues and big names. They’ve interviewed people like Scottish First Minister, Nicola Sturgeon. They wanted to do assignments and have meetings, not just to do everything over Skype.”
This version of the magazine will not only be online but will see a print run too as they want to give the children something tangible to be proud of and to enable them to put copies in children’s hospitals and pediatricians thus bringing more people into their community fold. The publication date will be 25th February 2018.
Rebecca Stewart added: “They are really passionate and they want to be heard. They want to have ownership of their voices and of their conditions. Sadly, people often underestimate children’s views.”
The two sisters have no science or publishing backgrounds and have five children between them, run a charity, publish a magazine, write all the content, do all the graphics and layout, do all of the outreach and logistics themselves.
“We didn’t have a business plan when we started it, neither the charity nor the magazine,” stated Nicola Miller, “we just ploughed in, bought a domain and built a website. We do everything, what you see here (gesturing to herself and her sister) is the entirety of both businesses, we’re it.”
“Moving forward, we have to work smarter. We take on a lot and we work very hard but we have very little choice. We are entirely self funded and we will always be a not for profit organisation. Its very important as our community can’t feel safe if they fear we are a corporate entity that may co-opt their story.” Explained Rebecca Stewart.
“We would be a very bad prospect for investors because we are not going to change and they are not going to make their money back. We’d love to bring people on board but it's hard to find people willing to work so hard for no money.”
“When our children were born we both decided to be stay at home mums. Stay at home mums do the most important job in the world but society doesn't always recognise that. Said Rebecca. “What people need to realise is that mums, parents, patients, they are the real experts. They have to become experts, and fast, because their life or their children’s lives depend on it.”
You can show your support for those living with rare disease by subscribing for your free quarterly digital edition of the fantastic Rare Revolution magazine at www.rarerevolutionmagazine.com.