Rare Revolution Magazine - Bench to Boardroom

When they found themselves part of a rare disease family, two sisters from Scotland took matters into their own hands setting up their own charity and magazine to raise awareness. Now, they are speaking to some of the leading minds in genomics as they addressed the latest Bench to Boardroom lecture at the Wellcome Trust Genome Campus last week (24/10).

“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 which 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.

There are currently tragically few treatment options available for the condition, and sufferers must wear protective clothing any time they are outside and even in some indoor environments.

Little Ted is the star of the Teddington Trust books and stories, which focus on teaching 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. The problem is that they have to control the message, the subject of a story will never have any power. The press’s responsibility is to the news cycle. The coverage they produce also betrays the trust of their subjects and this gets very messy when there are children involved. They always disappoint, they have a 100% record across our community.”

“At first we imagined a glorified newsletter. We initially built it up from the community on our Facebook page but we really wanted to create a multi-stakeholder environment.” Said Rebecca Stewart. “That community was one of the most unexpected things about it has also become one of the most powerful. We received one video message from a reader about how it had affected him and it was a very...raw message. We knew then that we were on the right track. So we have been working to create that space for the community across different rare disease groups and not just here, we have readers all around the world, it's a global community.”

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 with rare disease as half of the world’s rare disease sufferers are children. 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 Minster, 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, either of them actually,” 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. They don’t get a choice.” Added Nicola Miller. “The culture is changing, patient engagement is a buzzword right now but it must be more than a token gesture.”

Rebecca Stewart went on: “There are problems in this changing culture. There are egos to massage. We can understand that when you have trained very hard in a discipline it must be annoying when your patients have opinions but the patients, their families and carers have got to tread on toes. It's the only way we’ll get the medical working environment to evolve and understand that life with a rare disease or with a rare disease sufferer is full time not just when an appointment comes around.”