The Voice Of The Rare: Building A Community Through Shared Stories With Rebecca Stewart & Nicola Miller

In this episode, Tony Martignetti talks with sisters Rebecca Stewart and Nicola Miller as they share their transformative journey and the impactful work they have undertaken in the rare disease community, catalyzed by Nicola’s son Edison’s diagnosis with xeroderma pigmentosum. They delve into the challenges of navigating the rare disease landscape, recounting their pivotal roles in founding Action for XP and launching Rare Revolution Magazine. Their story reflects resilience, dedication, and the profound impact of community-driven initiatives in the face of adversity.

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The Voice Of The Rare: Building A Community Through Shared Stories With Rebecca Stewart & Nicola Miller

Introduction

It is my honor to introduce you to my guests. My guests are Rebecca Stewart and Nicola Miller. Rebecca is the Cofounder of RARE Revolution Magazine. She brings 30 years of client care experience and ethos to guide a dedicated team. With a passion for people and building networks, she has channeled a community approach to realizing meaningful access, resources, and the power of education through compelling storytelling.

Through the development of the company’s safe hands approach, Rebecca is committed to steering responsible and sensitive journalism and is active in driving the message forward. She’s also the Co-founder and Trustee of Action for XP, a charity supporting those with the ultra-rare condition of xeroderma pigmentosum, supporting people internationally with vital protective equipment, education, and health and well-being programs. I’m so thrilled to have you, Rebecca.

I also want to welcome her sister Nicola who’s the uber-creative Cofounder of the magazine as well. She’s the editor-in-chief. She has a strong background in design and a passion for writing. Nicola is the driving force behind the creative vision and uses her strategic experience in large-scale project planning to oversee their varied projects, including RARE Youth Revolution.

Nicola is also the Cofounder and Trustee of Action for XP. She volunteers her time to drive forward their mission, supporting families living with ultra-rare conditions. Nicola is also the author of the award-winning rare disease children’s book series, Little Ted. When not dedicating her time to rare diseases, she’s raising her two gorgeous sons and is a rare mama herself.

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I’m so thrilled and honored to welcome you both on the show. 

Thank you so much for having us.

I know it’s quite a mouthful to read these bios and bring you into this space, but I’m so honored to have you because I love what you’re doing. It’s really powerful when you’re able to share the voices of so many people out there while also trying to do the hard work of raising a family and trying to share all the hard work of raising awareness for XP. I’ll say it that way because it’s easier than trying to say the disease names. They’re so challenging. I’ll give you a lot of kudos for that. It’s amazing. 

Thank you.

Thank you. 

We’re going to have a great conversation. One of the things that I want to do is reveal what was the journey to getting to the work you’re doing and working together, which I know is not always easy. One of the things that we’re going to do is share your story through what are called flashpoints, these points in your journey that have ignited your gifts into the world.

We’ll bounce from one to the other and make sure we have a good balanced view of how you both came together to do the work you’re doing. In a moment,

Flashpoints

I’ll turn it over to you and let you share. One thing I’ll share is to make sure that we pause along the way, see what themes are showing up, and allow other people to connect with who you are. With that being said, Nicola, I’ll let you take charge and start with your stories or your flashpoints that made you get into the work that you’re doing.

Thank you, Tony. For me, there are probably three key milestones along my journey that have led me to where I am. The first flashpoint for every woman is when you become a mother. That throws you completely off access. That was certainly a big milestone in my life. We tried having a baby over quite a long period of time. Unfortunately, I had a few losses along the way, so when our first son was born, it was a really pivotal moment in my life and certainly a wonderful experience.

Quite quickly after, about twelve months later, that 2nd pivotal point came when Eddison was diagnosed with xeroderma pigmentosum. That changed everything. My career up until then had been in architecture. I’d been passionate about that. I was a chartered member of the body and was really passionate about that career. When Eddison was diagnosed, I was at a turning point when I was thinking of returning back to my career in a more meaningful way. He was getting to that age when I was thinking he could go to some nursery setting.

On the journey up to his diagnosis, my husband and I had been having a conversation about looking for nurseries. In that consultation appointment, everything changed. We realized very quickly it wasn’t going to be possible for him to go to nursery at that time, so returning to work was going to be challenging. That was the first change in my career when I realized things were going to be different, and on top of the impact generally on my career, this was going to be more seismic. It was going to change some of the big dreams and passions that I had for myself. 

Fast forward, and I know we’ll talk about it in a bit more detail, and Rebecca can go into it, that led Rebecca and me to founding our charity for Eddison’s condition. That brought us working together, which we’d never done before. We are sisters. We’ve always had a very close relationship, but we’d never had an opportunity to work together, so that was a really wonderful experience.

Gradually, that morphed into what became RARE Revolution Magazine. That was my third turning point when I realized architecture is something I’m saying goodbye to. I’m putting that in a box, closing a lid, and accepting that that’s gone. I’m building a different career I would never have dreamt of in advocacy and publishing, which were areas I knew nothing about before my son was diagnosed and my life was going in a different trajectory. Three key milestones all attributed to my gorgeous son who triggered each of those. Each of them has brought different challenges and, in way more measure, wonderful moments and great achievements. I could describe it across those three points. 

That’s wonderful. First of all, I want to honor that you had an attachment to a certain thing, but you then let go and said, “What’s being asked of me now? What can I leave myself open to? I’m allowing myself to see that next chapter unfold.”

We’re still of that generation where you had careers for life. You didn’t change around like you do so much. Millennials and future generations are much more dynamic in terms of seeing careers as a moment in time, but I trained for something that I thought was going to be a lifelong career. It was something I loved. I always felt my job was like a hobby. I felt really lucky to be being paid to do the job because I love design. I love being in that built environment.

I had to have this shift to think, “I could do something completely different. It’s not what I’m trained for, but maybe there’s something else that I can do that will allow me to be the mom I need to be and the mom I want to be for my son and my other son,” who came not long after. I needed to take that step because it wasn’t something I ever imagined. If you’d asked me several years ago if I’d have thought I’d be running a global-leading publication on rare diseases, I would not have anticipated that. It’s being free to think that life can take you wherever it is and not being afraid. There have been moments of fear along the way.

To your point, there is also that moment of not mourning it because that sounds a bit dramatic, but there is a moment of recognizing that something that you had worked for and that was important to you is now less so and that you are closing the chapter on that quite firmly and moving in a different direction. We talked before we joined this call about Effie Parks. That was something I resonated with her because she went through that experience of recognizing that her career was changing and was coming to an end. A lot of women can relate to that feeling generally in motherhood, but it’s amplified when you become a carer as well.

That’s wonderful. There are so many parts to that which I want to dive deeper into, but I want to turn it over to our friend over here, Rebecca, and hear about her flashpoints. What were the moments that maybe intertwined, but also, maybe some unique things that you want to share about your journey particularly?

For where we are in life, there’s no doubt that Eddison has been the trigger to start it all. We’ve got a lovely, close relationship. We were both pregnant with my 3rd and 2nd second child when Eddison received his diagnosis. Already in a state of being emotional, the news of Eddison’s diagnosis was really hard-hitting for the family.

I’m very fortunate I live in rural Scotland. Our family loved the outdoors. With the nature of Eddison’s condition, that was something that was going to be difficult for him. We could immediately see not only his challenges, but I could immediately see where Nicola’s challenges were going to be. We live 600 miles apart, I couldn’t be physically there to help her, so I felt the need to do something else.

That was when Action for XP began. It was set up by myself, my husband, and Nicola initially to understand what Eddison’s needs would be and support through a nonprofit. Later, we gained such amazing support and knowledge in that early year that we didn’t want that to go to waste. That was when we then founded the charity and started expanding our project work. Not my background either, advocacy or publishing, so for somebody so small, he certainly caused a big ripple in the family.

I was between work when I was off. I was off on maternity leave, so I wasn’t working at the time either. Through the work that we did with Action for XP, we really felt that there was this huge gap in resources. Nicola had written a series of children’s books for children with XP and realized a talent for writing that had been unrecognized. We thought, “What is out there for publishing?” and realized quite quickly that there wasn’t a lot.

Individual organizations, particularly charities and support groups, do an incredible job of disease awareness and lived experience storytelling, but they don’t have the budget or the platform reach to really accelerate that education. We thought, “What can we do?” Naively, we thought, “We’ll create a newsletter and a social media channel. That’s what we’ll do.” We then sent it out to the world.

The next flashpoint for me is sending things out into the world and realizing that you’ve stumbled across something that you can’t stop even if you want to. That very first edition was 54 pages long. We thought, “We’ve launched ourselves a magazine,” a little bit inadvertently but clearly something that was needed within the community. We’ve got Eddison, the realization of the gap and what was needed, and quickly, the support of the community and the validation of what we were trying to do.

Understanding XP

There’s something about what you’re sharing, Becca, that got me completely blown away. As small as Eddison is, he had an impact that is pretty large. Here you are. Even what you’ve done started small and started to get big. What I want to know is maybe you can share some of the numbers or statistics about XP. Talk about what you both collectively know, at the time about XP when you got into this. What did you then learn as you got deeper into it? For example, were you approaching more of a United Kingdom basis at that point, and then you went global? Tell me more about the growth of that particular aspect.

Action for XP started because when we got that news about Eddison’s diagnosis, myself, my husband, and the whole family went on to Google like everyone does to find information. What we found was really horrifying. We’ve realized he was one of less than 100 people in the UK, so there was no community. There was nobody I could phone that was immediately accessible. He was 1 of 2 people in our whole county.

The imagery was a very desperate image of children with horrific progressive and aggressive skin cancers. People were living in the dark with windows all blacked out and had difficult lives. I thought, “Oh my goodness.” You’re looking at your beautiful, fresh little baby and thinking, “Is this what his life is going to be?”

Once we slapped ourselves a bit, pulled ourselves off of the computer, pulled ourselves together, and realized, “You can’t go down that rabbit hole of despair like that,” he showed us that that didn't have to be what life was like. We didn’t have to have our windows shuttered. There were films that we could use that would give us light. There were light bulbs that we could use which meant we weren’t in the dark. There were lots of things that we could do. He could go outside. He needed this protective equipment and clothing.

We realized how important it was to have good information at the point of diagnosis. We felt strongly that we wanted to create a place where the next time a mom, dad, auntie, and uncle were Googling it, they weren’t going to find those images. They were going to find images of a 12-month-old having a picnic or an 18-month-old starting to go out on his little balance bike and the things that were possible and us not living in the dark. That’s not to say we wanted to dismiss the dark side and the difficult side of it. We’ve been very honest about that. We wanted to be more of a place of hope.

In doing that work, we started to find out that there was a bigger global community. While there were less than 100 in the UK, there were several hundred in the US and some in Europe. We started to get people reaching out from all over the world onto our Facebook page saying, “It’s so amazing to see your son doing these things. Where do you get that hat? Where do you get those gloves? How do you tell him about his condition?”

That spurred us into our project work. Some of our core projects are the books that Rebecca mentioned. We provide those free of charge in multiple languages with a little teddy bear that’s got a UV-reactive thread that the children can learn from. To any child in the world under twelve, we’ll send them to them for free. We also provide hats and gloves, which are UV protective to anybody, whether adult or child, anywhere in the world that needs them.

What’s really motivating is we’ll get messages back from people in Mauritius or Nepal saying, “Thanks so much for that package. This is the first time my child has been out of the house since they were diagnosed,” which might be eight years ago. They’ll send us pictures of them at a supermarket or trotting off to school for their first day at school because they didn’t have the tools to do it before. That’s what we wanted to do. We wanted to learn what we needed to learn for Eddison but then push that out to everyone else to realize that everyone can live their best life with this. It doesn’t have to be the outdated disease education that we were accessing. That spun into, “We can do that cross condition because a lot of the challenges are the same.”

I love what you’re sharing. There’s a sense of this message of hope instead of focusing on the direness of the situation. Oftentimes, not just in disease areas but in many areas, the news is always like, “What’s going bad in the world?” or, “How can we focus on what’s going to get people to care?” Instead, it’s like, “How can we inspire hope in other people to want to be able to do something that can improve their situation?”

One of the things that is really powerful about this, and it’s much like your own journey, is the sense that it’s not about throwing away your past and saying, “I can’t be an architect,” or, “I can’t be whatever I had planned to be.” Instead, it’s about, “This is a new possibility that’s opening up. It’s a new possibility in my life, but it’s being brought on by something that has happened to me.” I’m not trying to make it self-focused, but in reality, a lot of what we do in our lives comes from something that has happened to us. Since it has happened to us, we have an opportunity to do something for others and to become a source of hope for others.

You have a responsibility. When the numbers and the incident numbers of a condition are so incredibly low, the number of information you’re getting is low. If some of what you’re seeing is negative, it feels like all of what you’re seeing is negative. It’s really important to push through that with some more hopeful things and show that there’s that other way as well. It needs balance. I, for sure, wanted that the next time someone Googled it, they would see more positive images, which reflected what our life truly was and not the more difficult side of it.

When what you see is negative, it can color everything you see. That’s why it’s important to actively seek out hopeful things and show there's another way.

Fundamentally, that is what kickstarted RARE Revolution. Some of the experiences we had with Action for XP when we tried to raise awareness for either the work we were doing as a charity or for lived experience, when you work with the general press, and I know from many conversations with advocacy group leaders over the years that this is something that is shared, the mainstream press are looking for probably quite sensational human interest story.

Certainly, in our XP community, our families didn’t want to do lived experience stories in the press anymore because of the sorts of headlines we were getting. We’ve skipped over it with the way we’ve started. XP is a recessive genetic DNA repair disorder. That means our patient population cannot be exposed to UV radiation, which is all hours of daylight and some artificial lighting. 

What we were finding when we were trying to do lived experience storytelling through the press was that whilst the body of the story might be okay, we’d then get very sensational headlines. We’ve had headlines such as Real Life Vampires, Boy in the Bubble, and these kinds of things. Nobody wants to go to school the next day and be the real-life vampire that was in the paper or go to work and have that as the legacy that lives on about them.

To be the anti-media to awareness was what we were looking to do. That safe hands approach that you mentioned in the bio was really around. It was around sensitive and accurate storytelling that told the stories that were important to the contributors and not to what we thought would be interesting from a journalistic or catchy headlines point of view. That has been very important to us from day one.

It’s so powerful that you share this, Rebecca, because there’s something about, first of all, that sensitivity to people’s experiences and the ability to be almost unbiased by people’s stories. People come to you and say, “Here’s the situation,” but you’re getting beneath this story and saying, “How do we tell this in a way that’s going to allow people to connect with these individuals and inspire hope and action?” You didn’t go to journalism school or you’re not an anthropologist. Is that true?

Correct.

Yet, you embody all the things that really take a highly skilled person to know or to look for in the ability to get under the surface. What’s powerful about what you’ve done is you’ve gotten to the heart of the issue by being unbiased and getting under the surface of what most people would look to.

That was an important thing for us. It’s a tagline we use a lot, which is, “By the community. For the community.” We are part of the community. All of our team have some personal connection to that, whether it’s as a caregiver or a rare disease patient themselves. We know how we want to be treated, and that’s how we approach every project we do. We’re like, “What is the right thing for the community?”

That means you might not get the top clicks because you’re not the clickbait headline. You have to grow organically. It’s harder work to get your messaging out there because you’re not using those tools and tricks that traditional media use. At the root of everything is absolute authenticity and being completely genuine to our roots in the community. It’s a slower ride, for sure, and a slower rise to get where we need to, but those values have been paramount in everything we do. We test everything against that. We’re like, “Is it the right thing for the community?”

We’re mindful of how we work with people. Sometimes, people tell us things that they wouldn’t want to share. People can be very open because they’re having a dialogue like we’re having. T is having that skill to know what should and shouldn’t be shared and what can be damaging whereas traditional media will be like, “Gold dust. They’ve said this.” They’re already writing the quotes and the headlines out of it. We are the ante to that. That’s not what we’re about. We’re about meaningful and authentic education that really delivers to the heart of what the issue is rather than a five-minute flash in the pan that gives quick clicks. We try to be everything opposed to that to keep our values at the center of that.

Expansion Into Rare Diseases Advocacy

We went really fast into this whole making impact. I want to slow down, go a little further back, and say here you are starting this venture into the world of talking about XP at first. How did it mushroom into this world of all the rare diseases? That’s a big endeavor. If you could share maybe the story behind that you said, “It’s time for us to venture into these other arenas.” It’s to anyone who wants to talk about it.

We can blame the hormones, can’t we? We were both in the post-pregnancy. Pregnancy, you feel like it’s a superpower. We both came out of that and thought we could do anything. We had complete naivety and hormone-pumped will to do good.

We had discovered that we really loved working together, which we’d never done before. We were thinking of something that we could do together as a business, something that would fit in with our ethos to stay at home with our children and wouldn’t take up too much of our time. Somebody had said to us, “If you can’t find this place for information, why don’t you do it yourselves?” With absolute naivety, we said, “Let’s do it.”

What then emerged was listening. We put out into the community this was what we wanted to do. Most of what we do all day every day is listen to people. That’s the thing. We had the great opportunity to be part of an elevator course, which helped support new and startup businesses here in the Northeast. We had some great mentors. We were very lucky in that regard. Some of the mentors were less supportive in that they were like, “Who’s going to read it if it’s not about their disease?”

We fundamentally believe that the differences between the different rare diseases, the biological differences are not really the biggest part of anyone’s problem. What they all share is access to expertise, healthcare, and education. These were shared challenges. We believed that somebody’s lived experience in EB, for example, could resonate with somebody’s lived experience in a completely unrelated condition. That was what we believed to be true, so we very doggedly carried on in the hope that it would work.

Since it was a new career for us and we hadn’t had all of those years of training, it was an uphill battle all of the way. However, we weren’t afraid for it to go wrong because who would know? It didn’t matter if it didn’t work. We gave it our best go and said, “Let’s see what happens.” We were fortunate enough to be in a position to do that. Listening is an important part of that. That is how we got where we are. 

At the core, what’s interesting about what you shared, and it’s very beautiful about this too, is this sense that everyone is navigating their own path, but also, there are commonalities in this and that we’re all struggling to navigate this journey. When I say all, it’s whether you’re working in a rare disease community or navigating through a challenge in life. It’s trying to find out what’s the common strand and how you can talk to that.

There are people who have rare diseases that are so unique that no one will be able to really understand their journey. The key thing is to talk to them like, “You’re not alone. We’re here to support. We’re here to help. We’re here to give some ways to help you be seen, heard, or at least feel like there are other people who are navigating similar situations.” That is one of the beauties of what you’ve created. It’s this sense of community that allows them to feel like they’re not alone. They can listen to some of the stories, advice, and insights, that hhelpthem to feel connected to something bigger than themselves. Would you agree?

Isolation’s isolation regardless of the cause. I know that in those early weeks and months when Eddison was diagnosed, suddenly, I’d gone from being in these groups with other moms with other babies, all worrying about whether they were sleeping through the night and whether they were getting tummy pains. By being in these same groups and hearing them talk about those things, suddenly, I wasn’t thinking about when he was getting his first tooth.

I was thinking, “Is he ever going to go to school? Is he going to live past his teen years? What does this all mean for his health and his life?” I was thinking of all of these big issues. There was nobody that I could meet with over a cup of tea who had raised the child with XP that really knew that. Suddenly, your community in your friendship group has to become global. It has to become bigger because you’ve got to find that.

I found that connection and community not just in XP moms and dads but in any parent who’s raising a rare disease knows what I feel when I say it’s really isolating or I’m worrying about transitions at school because they’ve all been there. That’s irrelevant to the condition. It’s a common challenge. It doesn’t matter whether you’re the caregiver, the parent, or the individual yourself. Speaking to those other people gives you a sense of peace and reassurance that you cannot get from anybody else no matter how close they are to your life and your circle. We realized immediately how important that was.

That seems to be woven into the fabric of what exactly you’re doing. The ethos of what you are trying to create here is a sense of connection that you create. Would you agree?

Absolutely.

It boils over into the same as said when you’re an entrepreneur and you’re running a business, whatever that might be. Anybody who is in passion-led enterprises will know how difficult it is. There’s the importance of connecting with people who might not have the same business or be in the same field but can appreciate what you’re going through and support you. That’s also an important community for anyone who’s trying to make a change in a field or come into a field and develop a new business.

It’s the same for support group leaders. It’s vital. Nicola has led a conversation around burnout in the support group leader environment. It’s a huge problem and a very lonely place for people to be. Having a place where you can connect with other people who have the same challenges and who can really appreciate what you’re going through is a cathartic place to be. When you’re having a bad day, it gives you the motivation to get going. There is nothing like a good rant to get you kicked up and going for the next week.

Finding a place to connect with others who understand your challenges can be incredibly cathartic. It gives you the motivation to get going.

You said something there, Tony, about being the thread that weaves people together. Quite early on in the invention of RARE Revolution Magazine, we received a message from someone within the community who said exactly that. She said, “I feel like you’re the thread that weaves us all together.” That was a moment when I thought, “We are on the right track. It doesn’t matter what the challenges are and how difficult this is going to be. We know that this is the right thing and we are going in the right direction.”

You said earlier about mainstream media and what they often are attracted to is one thing. It’s almost like you created your own belonging. If you find out that you don’t belong in some place, then you create your own belonging. You create your own place to belong to. What you’ve done is, in essence, created a place and a platform for people to belong to. That is really neat. That is something that you should be proud of. Hopefully, it empowers you to continue to do what you do.

The important thing is that whilst it’s us that steer RARE Revolution, it belongs to everyone else. It’s not our voice. It’s a voice of the communities. That’s the important thing for people to remember. It is a platform where everyone can be heard. Whilst we might steer the ship and keep it going, it is something that belongs to the community and the ecosystem and is for them. Certainly, by no means, we wouldn’t have achieved the things we’ve achieved without the trust and the faith of the community to tell their stories. That’s a huge privilege.

Challenges Faced

I have so many questions. We’re going to run out of time. I’m going to start with a question about what are some of the biggest challenges you face on this journey to building this that you want to share. Maybe each one of you wants to share a challenge or if you want to collectively use your mind meld and share one. It’s up to you.

I’ll go first. For me, one of the challenges has been finding the right funding mechanism for this. It was really important to us that it was a subscription-free publication. We didn’t want any barriers to education. In the early days, we naively thought, “This is fine. We’re going to fill this magazine with advertising. It’s going to be  fine.” We then didn’t and quickly realized we needed to come up with something else.

It’s finding a sustainable revenue stream for a business that is a not-for-profit business. We don’t attract investors. We don’t receive grant funding. Keeping it going, growing, and achieving all that we want to achieve to do more, to support more, and to give more with a funding mechanism that keeps the lights on is probably one of my biggest challenges day-on-day, week-on-week. 

I agree with that. Another challenge from the early days was because Rebecca and I are siblings, we’re incredibly close and we almost have a mental shorthand in everything that we do. We rarely need to even talk to get across what we’re saying to each other. For many years, we were the two of us doing this on our own, but then, we realized we had to bring other people in to support.

We first started bringing in those team members and realized that that mental shorthand wasn’t going to work. They were a bit like, “We don’t know what you’re thinking.” We had to learn how to convey that to a team. That was really difficult initially and learning how to do that. We’ve improved on that. As a team that has expanded, that has become easier, but initially, that was probably quite difficult.

Thankfully, being siblings hasn’t been a challenge. A lot of people think it is. We always get asked whether we fall out and whether we have a lot of power dynamic battles for that. We never have had that. We get on so seamlessly. We have very different skillsets, so we never even consciously decided who was doing what. We fell into that, and that worked really well. We’ve never had any big conflicts or anything. Luckily, that hasn’t been a challenge. It was bringing in team members and letting them know what our vision was and sharing that with them maybe in the early days.

Possibly as well, and something that probably lots of people in the field can resonate with, is that because this wasn’t our background and our training, and probably confounded by the fact that we’d been off work to raise children, having the confidence to realize our value and our worth in the early days was really difficult. That whole imposter syndrome was large. Something that took us a while to get to grips with as well is believing in ourselves as people who could deliver this and that it had value to the community. Lots of people will be in the same boat, but, for sure, it was something that we struggled with.

I hear that loud and clear. That’s one of the biggest challenges that most people have. We all do. Everyone, to some extent, has that. If you’re human, you have that sense of like, “Who am I to do this?” I hear that loud and clear. That’s amazing.

Another thing from my perspective is that when you have a family member with a rare disease and you’re working on it, there’s no separation. I’ve got the charity, my job, and my son, so it can feel like everything is about that. I made a conscious decision that although Eddison does like getting involved in things and he’s involved in the RARE Youth Revolution and has done things for the charity, I try to keep it quite separate.

I’m being more conscious of that as he’s growing up as well. He is becoming a teenager. I separate that out. That’s really important, trying not to feel like everything in life is about a rare disease, especially from the perspective of a sibling. I don’t want my youngest son to be like, “Why is everything about that?” Trying to separate that is a challenging thing to do, but it is really important to do and =keep reminding yourself that there’s got to be a switch-off point.

Particularly because a lot of my day job is interviewing people, all day long, you’re hearing other people’s very impactful stories. We have a process with our team where if you’ve had a particularly difficult interview, we’ll jump on a call with them to debrief. It can be quite difficult hearing those stories day in and day out. The responsibility that you feel to portray them in the right way for that person can be a little bit overwhelming sometimes. It’s not a day job you can switch off from. These mission-led careers really get into every pore of your body. Being able to switch off can sometimes be quite difficult for all of our team. 

Books That Have Had An Impact

 I can relate to that wholeheartedly. It’s interesting you bring up this sense of needing boundaries but also making sure that there’s room for yourself in everything and in your life in general. You need to find ways for an outlet so that you can find space for yourself because it is a lot, for sure. I had so many other questions I wanted to ask, but I want to be respectful of your time. I do have to ask the last question, which is a question that I ask every guest. I will start with Rebecca. What are 1 or 2 books that have had an impact on you and why?

One of my favorite books is called The Dictionary of Lost Words by Pip Williams. It’s a fictional book, but it’s based on the creation of the Oxford English Dictionary. The main character is a child. She is sitting under this big desk where all these academics are collating words for the dictionary. Her mother has passed away. Her father has to take her to work. She has to be quiet and seen, not heard. She sat under the table, collecting the words that they discard, the ones that don’t make it into the dictionary. She collected these as a child.

Into her adult life, she becomes obsessed with words that aren’t making it into the dictionary, so she starts to talk to market stall holders and brothel workers. She collects the words of the communities that are not making it into the dictionary. I love that book because it so beautifully tells the story of the importance of the lexicon of communities, which is so entwined with what we do. It is fictional, but it’s a beautiful story about these lost words in language and how important they are.

I’m like, “I’m going to buy that book today,” because that sounds amazing. I don’t know how I missed that book, but that’s so cool. Thank you.

Mine are probably not quite so poetic, but my first is the Anne of Green Gables series, which I binge-read over and over when I was young. What I loved about that was that she had such gumption. Everything about what we’ve achieved as sisters from that 1st day of that 1st flashpoint of Eddison’s diagnosis has taken complete gumption. We had to get our big girl pants on on more than one occasion to dig deep and push through it. That really sums up our spirit in many ways.

I’m very privileged that I get sent a lot of books from the community to read and review in our magazine. I’ve finished reading one, which is The Truth About Things That Suck and How to Make Them Suck Less by Mindy Henderson. I’ve loved reading it. It’s so good. It relates to anybody, whether you have a rare disease or not. It’s written with a real sense of humor. Life can be difficult sometimes, but there’s always a way to pull yourself through it. Sometimes, you can do it with a bit of humor. I’ve enjoyed reading that book. It’s my most recent read. Those are 2 ends of the spectrum from early years to most current, but those would be my 2.

Closing

That is amazing. I’m completely blown away. I’ve got 3 new books to add to my list, or not 3 because I’ve read Anne of Green Gables. That is a great perspective. Thank you so much for coming on the show.

Thank you so much for having us.

This has been wonderful. I could go on for hours with both of you. There are so many things I want to ask and so many things I want to explore. This has been a wonderful conversation. I am so grateful for the work that you do and your perspective on things. Thanks for coming on. 

Thank you for having us. Much appreciated, Tony.

I’m not going to let you go that easily. Even though we are up on time, I need to make sure that people know where to find you. What’s the best way for people to reach out and learn more about the work you’re doing in the world?

Our website is RareRevolutionMagazine.com. You can find all of our back issues and our digital content there. Also, please check out RareYouthRevolution.com, which is our youth platform. It has the same great content but from our youth community, which is well worth a look at and a signpost to as well.

You can find us both personally on LinkedIn too. Feel free to reach out.

Please do reach out to both of them. You’re not going to be disappointed. There are so many great things. The magazine is fantastic. The work they’re doing in the world is a force to be reckoned with, so please do support their work. Thanks for coming on, and thanks to the audience for coming on the journey.

Important Links:

• RARE Revolution Magazine

• Action for XP

• RARE Youth Revolution

• Facebook page - Action for XP

• Rebecca Stewart - LinkedIn

• Nicola Miller - LinkedIn

• Little Ted

• The Dictionary of Lost Words

• The Truth About Things That Suck and How to Make Them Suck Less

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