Rare disease advocacy can lead to exhaustion. Discover wisdom learned from first responders and medical professionals on compartmentalization, self-care, and helping others to sustain your mission.
Rare Disease Advocacy Wisdom from People Who Run Toward Crisis
Rare disease advocacy can be as simple as sharing your story. For some of us, that may be the limit of what we can give to our communities. But that gift is precious.
I’ve been a storyteller for over 25 years, and that experience has taught me something—stories are sacred.
A story is the culmination of someone’s life experience. And when someone shares their story, it’s their way of saying, “I exist. My life matters.”
I’ve told countless stories in my career. But one experience I treasure is telling stories about people who save lives.
This article is going to be different than much of what I write here. I’m going to share some stories I’ve covered in my career, and extract some principles for rare disease advocacy.
While I spend much of my life advocating for PKU, newborn screening, and rare disease issues, that is my passion, not my profession. I’m Director of Photography/Editor at Lawrence Production & Media in Shreveport, Louisiana. Besides filming TV commercials, web videos, and other video content for our clients, we also produce short documentaries for medical schools about people who are recovering from trauma.
That’s one of the many reasons my advocacy work explores the impact of trauma. Not only have I been affected personally by trauma, and shared my personal narrative as a way to heal from my past, but I explore this subject in my career as I tell stories about others who have endured the unimaginable.
These are just some of the stories I’ve told at work over the past decade. But before that, I spent countless days and nights filming first responders saving lives when I was a TV photojournalist (more on that experience in this article called “Regaining Hope: My Journey to Rare Disease Advocacy”).
I try to learn from their example, and practice these principles in my advocacy.
This is going to be something that I recommend you take in at your own pace. To get the full experience, as you are reading and a film appears, I recommend you stop and watch it before proceeding. The points I make in each reflection depend on context from the stories. There’s an hour’s worth of films here, and each one is about 15 minutes. So take this at whatever pace you need to. If you can take it all in in one sitting, great. But if you don’t have the time for that, I understand. Just take them one at a time.
This is meant to be something for you to read, watch, reflect on, and apply in your life and advocacy. These are lessons I learned throughout my career. So this is not four quick tips to consume and move on.
Think about all of this.
Disclaimer: I’m not going to share anything too graphic in the article, but these are stories about recovery from trauma. And the films do contain some graphic images. So viewer discretion is advised. I’m going to be somewhat clinical, non-emotional, and very direct while describing these events. This will not be light reading. But these are real stories from people I have met. It is a description of their life experiences. And I am simply trying to do justice to their experience while sharing principles that I think we can all learn.
Also, thank you to the many medical professionals I’ve met in my advocacy journey. Your commitment to save lives inspires me every day.
1. It’s OK to Become Emotionally Involved
One night, Layla Jamison was driving home after work. She lived in a rural area in Southern Mississippi, and a storm had recently passed through the region. The ground was saturated from heavy rainfall, and as she was driving down the highway the road washed away. It just… disappeared. And she was in a car accident—a massive pileup.
Every major organ system in Layla’s body was injured. Multiple broken bones. Serious internal bleeding.
But what remains with me is the fear she described. She said she sat there in her car, screaming in pain and begging for help…
Until a paramedic showed up. And he happened to be a family friend.
When we interviewed Jason Morse for the story, he was like other paramedics I’ve met. Professional, compassionate, but able to compartmentalize to get the job done. He described in factual, and non-emotional terms, what happened to Layla and how he helped her. He was one part of the large team of first responders and medical workers who handled this case.
Toward the end of the interview, our producer asked him how he felt knowing he helped save her life.
That’s when this stoic paramedic broke down.
This is one of those stories that sticks with me. When I think of Layla, which is often, I also think of Jason. He was able to compartmentalize when necessary, but it was his compassion—his humanity—that drove him.
Towards the end of the film he says something that touches me deeply, still: “I’m just blessed that I have the knowledge and ability to help.”
Being able to help people is a gift. It’s something that any of us involved in advocacy should cherish. Our primary mission should never be to build up ourselves, our personal goals, or our brand. It should always, always, always remain about the only thing that matters…
Helping people.
A Night Honoring Healers: Layla Jamison
We filmed that story in the summer of 2022. I was working on it when I first created this website and wrote my mental health story. I don’t mention Layla at all in it, but her story was on my mind the entire time. And it’s a story I carry with me even now. It explores themes like enduring the unimaginable, hope during your darkest days, and trying to move on when you know life has changed forever.
And those are themes I’ve explored on this site ever since.
But the key takeaway from this story, for me, was that this…
When you spend your life trying to help people, it’s OK to become emotionally involved. That’s a strength, not a weakness.
How do I apply that in my advocacy?
I’ve done a lot of public work over the years. I’ve produced films and podcasts, I’ve given speeches, I’ve written articles, I’ve engaged in legislative advocacy, and I’ve partnered with many organizations over the years in my mission to raise awareness of PKU, newborn screening, and rare disease issues.
But equally as important to me, if not more important, is the work I do in private. I invest in people’s lives. I encourage them in what they are doing in advocacy. I try to answer people when they reach out to me. Sometimes it’s to give a piece of advice, share a resource, or connect them with someone else who can help. Sometimes they just want someone to listen to what they’ve been through.
I become emotionally involved. Because people are the mission.
People in our rare disease communities are hurting. And sometimes all they need is someone to talk to. Someone to listen. Someone who shows an interest in their personal well-being.
It’s OK to become emotionally involved. But you have to know when to compartmentalize and focus on the task at hand.
And that is something I am trying to learn.
2. Know When to Compartmentalize and Make Decisions
Having compassion does not mean that you surrender your ability to make decisions. You have to know when to detach yourself, just a little, and compartmentalize to get the job done.
Let me introduce you to one of my heroes, Juan Zuniga.
Juan and his family own a restaurant here in Shreveport, Louisiana. One night he and his mother were leaving after they closed up. As he got in his truck, he heard someone attacking his mother across the parking lot. He ran to protect her and was shot twice in the chest.
Corporal Robert Cerami with the Shreveport Police Department was one of the officers who arrived on scene, and immediately ran to help Juan. Juan was laying in his mother’s arms, not moving. Turning pale. Bleeding out.
Corporal Cerami had a trauma kit on his belt, and he packed Juan’s wounds with combat gauze. An EMS crew transported Juan to the nearby Level 1 Trauma Center at Oschner LSU Health Shreveport.
The trauma surgeon, Dr. Navdeep Samra, and his team provided emergency surgery to stabilize him. Dr. Keith Scott recommended that they use ECMO (Extracorporeal Membrane Oxygenation) which removes the blood from the body, pumps it into a machine, oxygenates it, and restores the blood. Dr. Scott said that Juan had zero lung function. And ECMO was the only way they could keep his oxygen level stable.
An Evening for Healers – Juan Zuniga
While I helped film this, my former colleague and extremely talented filmmaker Colby Doler edited this story.
Juan’s attitude amazes me. He’s full of joy, loves to laugh, and is a very giving person.
I mean… He laughed about getting shot. That’s an experience that none of us can understand unless we’ve been through it. But I can tell you… If I had endured what Juan endured, I don’t think my attitude would be as positive. And I don’t think I’d be able to laugh about it.
He’s a gift of a human being, and I’m so lucky to have met him. I try to get over to his restaurant every now and then (yes, they have some great vegetarian options), and every time I do we talk about this story.
Juan survived. Why?
Because he had dedicated professionals at every step of the process who are committed to their work. And that process began with the 911 operator who received the initial call and continued on to the last physical therapy team that helped Juan at the end of his recovery. I mentioned Corporal Cerami, Dr. Samra, and Dr. Scott by name because they are the people I met. But countless of their colleagues were involved as well.
We produce these stories at work for a fundraiser for the medical school. We create two 15 minute documentaries each year for the event. At the end of the night, after the films have been screened, they bring up all of the Healers who were involved in the respective cases. And you get to see how many people it takes to save a life.
It is clear to me that they all care deeply about what they do. But they know when to compartmentalize and focus on the task at hand. They know how to think quickly and make decisions.
And their decisions save lives.
This case also reminds me that rare disease advocacy is a coordinated effort. We are all part of the same team. No matter if you are an individual sharing your story, a medical worker serving our community, a brand producing medicines and other treatments, or a representative of a non-profit organization…
We are all on the same team.
The goal is helping people. Sometimes that’s giving them formal help and connecting them with an organization. Or sometimes it’s taking a moment out of your day to have a private conversation with someone. But…
None of us can do this work alone. It is always, always, always a team effort.
To me, one of the most important things I’ve done over the years is to develop an extensive network of personal and professional relationships, all bound together by our desire to help people and serve our community.
Me and Juan at an Evening for Healers in 2022. The next day I flew to film a PKU event in the Boston area, and all I wanted to do was talk about my hero Juan. I got to share his story with some of my friends that weekend.
But back to Juan for a moment… I said earlier that he is one of my heroes. And that’s because his story does not end with his recovery. Our community held a fundraiser to help him and his family recover from the financial strain they endured. But he gave that money back to the medical school, and they used it to purchase mobile ECMO machines.
Because of that decision, Juan is now saving lives as well.
3. When You’re Off, You’re Off
Jackie Tucker was a police officer in Saraland, Alabama. In 2016, she and her partner responded to a domestic disturbance call. Shots were fired at the officers, and Jackie was shot in the head.
Jackie’s husband, Aaron, was also a police officer. Both of them worked in the field where nothing might be happening one moment, and then suddenly it’s chaos. Despite his professional training and his ability to compartmentalize, when he heard that Jackie had been shot, he was in the same situation as others he had helped…
He was a husband concerned about his wife.
Jackie was treated at the scene by paramedics. Then she was airlifted by helicopter to the Level 1 Trauma Center at USA Health University Hospital in Mobile, Alabama. The trauma team, the surgeons, the nurses, the physical therapists, the occupational therapists, the staff… They all worked as a unit to save her life.
A Night Honoring Healers – Jackie Tucker
I wish I could say that Jackie had recovered fully. But honestly, I don’t know. And I think about that a lot. The last I heard, which was some years back, she was still struggling.
Whether it’s physical or emotional, some people recover from trauma. Some don’t. That’s just a fact of life.
What is the common thread between all of these first responders and medical professionals? In their world, everything can be silent. Still. And then in a split second, it’s chaos.
I’ve spent most of my career on the outskirts of their world. When I worked in the field as a TV photojournalist, I filmed as they saved lives. These days, I meet them long after the story is over, and get to hear their perspective after the chaos has died down. And after they have had time to reflect.
The one thing I have noticed about them all… Is that they don’t let the impending chaos that they know is coming prevent them from living a good life.
When they are off, they are off.
They spend time with their families.
They give to their communities.
They grow in their profession.
And this is another principle that I am trying to practice in my life. I’ve spoken with other rare disease advocates who put themselves out there in their respective communities. And we all seem to have this drive to help others.
There is a lot of trauma in the rare disease community. It’s not something we always talk about. But it’s something I have observed over the years as I’ve traveled and interviewed many people in my rare disease community. And that trauma influences the way that we approach rare disease advocacy.
We are driven to serve, but sometimes that pushes us to exhaustion.
We want to help people, but don’t always know what to say when someone reaches out, begging for help or sharing their traumas with us.
Or we see the deaths of children in the rare disease community, and vow to do whatever we can to stop it.
That’s my story. And over the years, I have driven myself into exhaustion many times. But I am learning to pace myself.
When I’m off, I’m off.
I spend time with my family.
I serve my local community.
And I try to grow in my profession as a storyteller.
It’s what I do during the calm before the chaos hits again.
4. Help, and Move On
Clay Moock was injured on the job and suffered third degree burns over 90 percent of his body. When help arrived, they knew he needed to get to the hospital very quickly. So he was airlifted by helicopter to our Level 1 Trauma Center.
Maranda Granger was the flight nurse on duty. When we interviewed her, she struggled to maintain her composure as she described the extent of his injuries. It was clear that she has thought of this case countless times since that day.
In the film, I used a brief soundbite where she says that once they delivered him to the hospital, they gathered their things and got out of the way. But in early versions of the film, that section was longer. She talked at length in her interview about how as a flight nurse she has to leave her work at work. But also when that call is over, you have to learn to deal with it. And move on.
At the end of the film she says, “You have to be able to know that you did your best, and you leave it on the field, per se. And you’re able to lay down your head at night. Because there’s always that next call.”
An Evening for Healers – Clay Moock
Disclaimer: This film contains graphic depictions of third degree burns that some viewers may find difficult to view.
It takes months to work on these films. It’s one of the many reasons I go through periods where I’m very busy in advocacy, and then go silent for a while. Working on this one in particular was tough, because it required sorting through the photos of Clay’s third degree burns, and deciding what was appropriate to show… and what wasn’t.
But we record the interviews at the beginning of the process. And I spend months thinking about them. I listen to the soundbites over and over, until the story gets deep inside of me. Until I know it by heart. It’s not the same craft, but I treat it almost the way an actor would when they prepare for a play or film. I have to let the story get deep in my heart. It’s the only way I know how to tell a story. I get attached.
And in that process, I couldn’t get Miranda’s words about self-care out of my mind. One morning I wrote these words in my journal: “Help, and move on.” (I later wrote an article on this site inspired by that idea. You can read it here.)
That’s now the way I try to approach rare disease advocacy.
The problems in the rare disease community are enormous. Just the following statistics alone are staggering (source: NORD):
- There are 10,000 known rare diseases affecting 400 million people globally
- 95 percent of all rare diseases have no approved treatment
- 50 percent of all people in the US who have a rare disease are children
- 30 percent of children living with a rare disease will not survive past the age of five
That’s overwhelming to me. How do you help to change that?
This is where I think it’s important to remember something…
Advocacy is about the masses. But it’s also about individual lives. And we simply must not forget the value of a single human being in our mission to change the world. It’s a cliche, but it’s true… You may feel like you can’t change the world, but you can change the world for one person.
We may be seeking systemic change to address all of the problems facing our communities. But something I believe with all my heart…
If you change enough people, you change systems.
I’ve had a lot happen in my life, both in my past and in recent years. And I’m just not capable of focusing on the big picture. Not anymore. The best I can do is focus on one person at a time. I help the person in front of me, and move on.
Help, and move on.
5. Never, Never, Never Give Up
I originally planned to share only the four principles above. But while writing this, I thought of a friend and former colleague from the TV station who became a first responder, and died years ago. And so I wanted to close with these final thoughts.
I write about trauma. A lot. And that’s because it helps me confront my past so that I can live in the present. And I have endured a lot of loss over the years.
When I was 18, my step-sister was murdered.
A few years ago, my sister-in-law died at the age of 53 from triple-negative breast cancer. A few hours later, my wife’s grandmother also passed. Dealing with both of those deaths at the same time… It was a lot to handle.
A few months later another family member died. That’s all I can say about that.
Last fall, a former colleague of mine from the TV station was killed in a car accident. He was a good guy, and a good friend to all who knew him.
A few months ago, my god-sister passed unexpectedly at the age of 40.
But then there’s my friend and former colleague whom I think of frequently.
Thomas LaValley was killed in the line of duty on August 5, 2015. He began his career in broadcasting as a TV photojournalist at KTBS-TV and worked the crime beat for a few years. Eventually he decided to leave broadcasting and become a police officer.
He was a protective kind of guy. A good man.
One night he responded to a domestic disturbance call. As he walked in the door, he was attacked, shot, and killed.
I had lost touch with Thomas over the years. I left the TV station before he joined the police, but had kept up with him on social media. I had even run into him by chance at the video game store a few months before he died. But I didn’t know the full story of how he became a police officer.
He failed his first attempt at the police academy. But he didn’t give up. He kept at it, and eventually graduated at the top of his class.
I shared about Thomas and the impact he continues to have in this story from my podcast. It was called The Power of Choices: Making an Impact on the World. Juan Zuniga, whom I mentioned earlier in this article, had a role to play in this story as well.
His closest friends held a fundraiser to build a memorial for him at one of our city parks. I bought one of the t-shirts they sold, and it has his badge number on it: 1284.
Every time I wear that shirt, I remember Thomas. I often wear it as an undershirt, a silent reminder to myself of what it means to live with honor.
Protecting those you love. Serving all whom you can help.
When I was producing my podcast, there was a phrase I used at the end of every episode. It was never meant to be just a catch phrase or for personal branding. It was deeply personal.
It wasn’t just about advocacy.
It was advice for life when you feel everything turning against you.
It’s something I learned from Thomas and those like him.
Never, never, never give up.
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