Mindy Buchanan, an LPA-certified coach, is the director of programs for the Myotonic Dystrophy Foundation (MDF), a nonprofit organization that is the leading global advocate helping patients and families navigate the myotonic dystrophy (DM) disease process, and is often the first resource contacted by newly diagnosed patients, their families, their social workers and their physicians around the world. Myotonic dystrophy is a rare, multi-systemic, inherited disease that affects an estimated 1 in 2,100 people, or over 3.6 million individuals across the world. In her role, Mindy leads MDF’s community-facing programs, from community support, education and resources to coordination of volunteer and advocacy groups.

We recently spoke with Mindy about advocacy, storytelling and the value of coaching. 

What is your personal journey that led to the world of advocacy storytelling? 

While I’m not personally affected by Myotonic Dystrophy, for many years my work has been with communities experiencing chronic, short-term or terminal illnesses. My role usually involves getting people to talk about their lived experience so we can understand more about a condition, offer support and advocate.

My early experiences were with the use of personal storytelling to understand experience. Storytelling to understand experience can look like a lot of things: fiction, poetry, a biography. But the goal is an internal one, to make sense of what's happened to you.

For example, I led a writing group for adolescents and young adults with cancer. We published a paper about the usefulness of having storytelling and writing as part of an adolescent support group, because that particular group doesn't typically engage in traditional support programming. So you have to find other ways to support them. That writers group has actually continued on beyond my tenure and it still goes on today. 

From there, I moved to another organization for adolescents and young adults with cancer and that’s where I learned about crafting storytelling for advocacy purposes or storytelling for impact, versus it just being a cathartic or therapy-based activity. The point of advocacy storytelling is different. With advocacy storytelling you're explicitly trying to effect change in a room or within a person.

I also was a fellow with an organization called A Fresh Chapter. With this organization, I was in Kenya for two weeks and we were training and working with Kenyans who are running their own programming for people with cancer in order to help them gain funding or support from their governments. 

It was my work with the Foundation for Sarcoidosis Research (FSR) where I was first introduced to Living Proof Advocacy (LPA), when we hired them to do coaching for our patient advocates. I really liked the LPA Whole Advocate model of storytelling for impact and it seemed like a natural fit for me, so I became a certified coach and began coaching patient advocates at FSR.

Having had both of those kinds of storytelling training—storytelling for understanding and storytelling for action—I coach people along the journey from processing a story to using that story as a tool to create change. Sometimes you can tell people haven’t processed their experience yet and that needs to happen before they can really start digging into their advocacy story.

What do you see as the value or impact of coaching people on their advocacy stories? 

I think a lot of organizations don't spend enough time honing storytelling within their communities. I think they let the community just “say their story.” But when it’s crafted, when you have a very specific call to action or talking points that you are working into an otherwise very organic telling, that's when you hook people. It’s the most powerful way of making sure people listen and take action.

And for the storyteller/advocate, it creates confidence. I see a lot of people who want to tell their story, but they can be all over the place and, as a result, lack the confidence that their story can be engaging and impactful. They see others doing it, so I encourage them to ask, “What’s good about it? What is that person doing that you can’t do?” The answer is nothing. It just takes focus, framing, practice. And that’s what the LPA approach does. It helps people tell their story in a pointed way that gives them confidence that they wouldn't otherwise have.

For example, I’m working with a caregiver right now. Her goal is to raise money for a program that serves caregivers for people with type 1 myotonic dystrophy.

I've worked with a lot of caregivers in my time and I've been in the public health space for almost 20 years. And what you most often hear from them is the story about how their loved one became sick and all the things that happened to them following diagnosis.

What is harder for caregivers to talk about is what happened to them. So, I sent her a copy of Living Proof and some tools, we did some brainstorming and she’s done multiple iterations of this story. Now, she's got it down to this really, really strong personal story. 

There's a moment in her story where she talks about trying to wrangle all of her family’s luggage through airport security because her husband can't do it, her in-laws are elderly and she has a small child with her. It’s in that moment realizes that she's alone to do all of this. 

But that wasn't the first thing she talked about. Her story started with her partner’s experience. It took some work to get her own experience into the forefront. While caregiver stories are intrinsically tied to the person they're caring for, they still have their own experiences. Living Proof Advocacy has been the most helpful model for getting caregivers to think about their own stories. 

It's asking the question, “What do you want the audience to think about you coming away from this moment?” When you ask someone that question, it helps them shift their mentality from their loved one's story. In her case, she said, “What is my story? Because I don't want people to come away just with what my partner's story is. I want people to come away with what my story is because what I'm asking people to do is to give us money to create respite programming for caregivers.”

I've watched it happen for people in real time. It's almost like this tiny physical thing. Even on Zoom, you can see it. It's that moment where all of a sudden the light goes on—and they see the core of their advocacy come to life.

To read more about myotonic dystrophy visit https://www.myotonic.org/