Amy Acton of Phoenix Society for Burn Survivors: 5 Things You Need To Know To Successfully Lead A Nonprofit Organization
Do your homework. You’ll want to be sure to ask the question, “Do I understand the legal and business needs of starting my own nonprofit?”. When starting a nonprofit, there is a need for capital and a need to be a very active fundraiser as a full-time profession. When starting, chances are that there isn’t yet an army behind you. As a leader, you have to be committed to a love for engaging, raising money, and starting your own business with a solid plan. Unfortunately, having a passion or knowledge of the cause isn’t enough; it is vital to success to have a plan and be committed to growth both personally and professionally.
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Amy Acton.
Amy Acton is the Chief Executive Officer for Phoenix Society for Burn Survivors, where she has served the organization for over 20 years. Amy is a burn survivor, former burn nurse, and leading advocate for the burn community. She has dedicated her career to promoting the expansion of burn recovery services and resources for burn survivors and their loved ones. Throughout her time with Phoenix Society, Amy has played an instrumental role in developing the Phoenix Society’s mission and core values, uniting survivors and community members so all feel seen and heard. Through this belief, Amy built strong relationships with corporate partners and hospital burn centers across the country, leading to the growth of Phoenix programs and burn awareness. Through these relationships, Phoenix Society has connected more people to make instrumental changes in the burn survivor journey from acute care to community reentry.
Thank you so much for doing this with us. Before we begin our readers would like to get to know you a bit more. Can you tell us a bit about your “backstory”?
I was a scrappy and goal-focused girl who grew up on a farm in the middle of Michigan with three older brothers and a younger sister. My burn injury happened when I was working at a yacht club, and we hit a high tension wire with a sailboat that we were moving on a trailer. As a result of my injury, I did not remember anything that had happened. I ended up in the hospital and survived that accident because of a great, supportive family, a fantastic burn team, and what I brought into it. During my recovery, when I found things tough, I leaned in on the foundational elements of being a tough, family-oriented, and supported child. I believe that I went into it with a lot of positivity, social skills, and physical tenacity — all pillars of things I learned as I grew up.
Can you tell us the story behind why you decided to start or join your nonprofit?
I was on the heels of graduation and on my way to nursing school when my burn injury occurred. I decided to go to nursing school because I didn’t know what else I wanted to do, and my burn injury delayed this path. My burn injury gave me an “oh wow!” moment. I believe I fell in love with the burn unit team because it triggered my background in high school sports — I saw what a great team they were and wanted to be a part of it. I’d decided then that I wanted to become a burn nurse — and once I became a nurse, I worked on a unit for 13 years.
In my first year of becoming a burn nurse, I immediately noticed that although I didn’t bring up my burn to patients, people would see it and ask questions. I quickly recognized that my injury allowed me to help people differently — in addition to the nursing care I provided. During that time, I had my first real experience with peer support.
As I continued in the second year of my nursing program, I attended a Phoenix World Burn Congress, a Phoenix Society for Burn Survivors Program. I participated in that conference with 120 others, and I took my mom along because it was a free trip to Philadelphia, and we enjoyed traveling together. I remember sitting there with my mom, and our jaws dropped — the stories and the experiences of others took us out of our own story. While our story was very positive — we came together as a family, I was surviving, working on a burn unit, and I was a success story because I had the needed tools and resources — Not all survivors had that same experience.
I started developing aftercare programs at my burn unit from what I learned at Phoenix World Burn Congress that year. While I loved my job as a burn nurse, when Alan Breslau retired, I knew this was the next challenge and opportunity to learn and to have a more significant impact. At the time, I took a leap of faith, Phoenix Society raised enough for my salary for one year, and I came over to Phoenix Society. Together, with a great bunch of team members, we built what I believe is the leading organization for burn survivors in our country and beyond — and it has been an incredible journey.
Can you describe how you or your organization aims to make a significant social impact?
At the Phoenix Society for Burn Survivors, our primary goal is to help people reach their human potential by convening the community and bringing people together with similar experiences to learn and grow. By deeply listening to the community, we identify some common themes and challenges that the burn survivor audience has. Then we set out to address them or work with others to address these issues, such as with healthcare providers or partners.
Without saying any names, can you share a story about an individual who helped your idea so far?
First of all, I have so many; it is tough to think of just one. The first that comes to mind is a dear friend that was a teacher before she became a part of the Phoenix Society. She had identified the need to help herself and then eventually help children with burns face integration back to school. As a survivor, my friend had to go back to school with pressure garments, and she had to overcome this complex challenge as a teacher. She helped us realize the social impacts, and because of that, we’ve spent much time creating and providing our community with tools and arming our families with what they need to overcome such a big challenge. With her help, we were able to create simple, tangible tools such as the idea and importance of speaking with children survivors on the importance of rehearsing your responses when asked a question about a burn. This dear friend is just one example of the hundreds of survivors that have provided us with suggestions and ideas for great content that will help our survivor community on their journey.
In addition, there was a group of individuals that I worked with shortly after I became a part of the organization that helped create and operationalize a program that helped survivors become trained to offer peer-to-peer support. Our founder, Alan Breslau, had the vision to create this, but our team of supporters helped create a program in a way that it could scale. Today, we call this our Phoenix SOAR (Survivors Offering Assistance in Recovery) program that has impacted thousands of people since its pilot in 2001. Today, it’s in 70+ hospitals across the country and provides in-person and online support.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
- Legislative Prevention: The national building codes are the minimum standards for safety, and we as a country aren’t adopting them, which would keep us safer in our homes and where we work. There has been much resistance to adding some of these requirements when we build new homes. For example, take fire sprinklers; adding them into homes would reduce many deaths and injuries in our country. There are many myths about the cost and expense of fire sprinklers; however, when you look at the long-term cost of a burn injury, a few thousand dollars at the time of building a home is a much better outcome. As an organization, we’ve actively promoted life safety codes with our partners at NFPA.
- Discrimination of those with Facial and Body Differences: As an organization, we strive to help others understand and accept those that look different from us. Whether they are facial differences or burns of the hands, how do we as a community learn to accept and include those with burn injuries into the workforce or the community?
- Addressing Burns as a Chronic Condition: A burn can be a long-term chronic health issue, and we need to look at it that way. The questions we ask as an organization are how do we look at burns as a chronic issue, and how do we assure this population’s medical and psychosocial needs remain strongly supported? Pressure garments, for example, are a basic need for many survivors to help them heal, reduce scarring and recover from such injuries. For example, there is limited access for many to obtain pressure garments in the healthcare setting, and insurance companies may not cover them. As an organization, we’re seeking ways to help understand and challenge this inequity by addressing these common concerns as a community.
How do you define “Leadership”? Can you explain what you mean or give an example?
In the simplest terms for me, I relate it to my time in high school when I played sports. I had a few fabulous coaches, and during that time, I learned that it’s about bringing people together for a common goal and pushing them to achieve the best possible outcome on that goal. As a leader, your job is to provide guidance, support, and resources to help accomplish those best outcomes.
For me, it’s about the people and taking their good forward-thinking ideas to help meet the community’s needs. As a leader, I firmly believe in bringing people who have different skill sets than me and working with them to achieve the vision we need and want for the organization. I love nonprofit work because while it is a business, it is one with direct human impact that can save lives. When we make lives more meaningful, we can help the people around us reach their human potential. Providing that direct impact makes for an exciting thing to galvanize around, to keep focused on values and continual learning.
Based on your experience, what are the “5 things a person should know before they decide to start a nonprofit”. Please share a story or example for each.
- Ask yourself, “Do I have to start my own nonprofit?” Before diving down the path of thinking you need to start your own nonprofit, perhaps perform a quick search to determine if that is the path you seek. Get involved, learn and understand if there is already an organization you can get behind that may be doing some great things. In the burn community, many individuals and organizations are doing great work, yet the power is when we come together to have an even bigger impact. Reducing redundancy and leveraging the best of each partner and individual. The power would be immense if we could harness all that great work for a common goal. In the burn community, we’ve done that well; there aren’t several national organizations serving the community today. If there is a local or national organization doing something similar to what you’re seeking, I recommend participating in or learning from them before trying to start your own.
- Do your homework. You’ll want to be sure to ask the question, “Do I understand the legal and business needs of starting my own nonprofit?”. When starting a nonprofit, there is a need for capital and a need to be a very active fundraiser as a full-time profession. When starting, chances are that there isn’t yet an army behind you. As a leader, you have to be committed to a love for engaging, raising money, and starting your own business with a solid plan. Unfortunately, having a passion or knowledge of the cause isn’t enough; it is vital to success to have a plan and be committed to growth both personally and professionally.
- Use Your Resources. There are many resources and organizations that support nonprofits, such as Bridgespan and BoardSource. I would also recommend identifying a nonprofit leader as a mentor or scheduling conversations to talk to other nonprofits to understand the work and the challenges. Having a firm business background is excellent, but it is also essential to understand specific nuances in the nonprofit space that is different from traditional businesses. In addition, you’ll want to do your research to ensure that you have services or products providing high value to the community you’re serving.
- Know Who You Are. Before I stepped into the role of Phoenix Society leader, I was coming out of a hospital and healthcare setting, which was a place where there were always a lot of systems and people around me. When I walked into Phoenix Society, I had myself, a part-time employee, and a truckload of stuff. As a leader, I had to figure out who and what the organization would be moving forward. The organization had a few loose programs, a magazine, and a Phoenix World Burn Congress that local groups would help put on. I set out to further understand what made the Phoenix Society special. In that discovery, I decided to further develop our peer support program. We started there and knew we had to do that well and would be taking a risk doing so. We didn’t have much funding, but we had to get the people and expertise we needed to make this possible. I received excellent advice from a leader during this time to learn the power of saying “no” and knowing that you can’t always solve every problem. We had to prioritize and stay focused on our primary project at that time.
- Build a network. For me, this was key as a new leader. I didn’t know what I didn’t know. I went into it knowing I needed a network with different expertise than I had. When I started there were basically no other employees and I could not afford them, so the Board of Directors was more of a working board helping to get things done in the business. As we have evolved we have transitioned to a Board of Directors that is highly strategic, forward-focused and connects us with the resources we need to achieve our vision. I firmly believe in collaboration and how we can do that in the nonprofit world. We’re all raising money, competing for space, and doing good work to survive. I think it is building a network, learning how to collaborate and what distinguishes you from others, and bringing that forward in the world.
We are very blessed that very prominent leaders read this column. Is there a person in the world who you would like to talk to, to share the idea behind your non profit? He or she might just see this, especially if we tag them. 🙂
In the world of nonprofits, I think every nonprofit leader would tell you that they would love to talk to a funder that would be committed to the cause and be a long-term investor in the vision and the plan. If you’ve been in the nonprofit world, you’ve probably heard the saying, “no money, no mission, no mission, no money.” I want to work with those who can help better connect us with people who can help us grow as an organization. I enjoy networking with other business leaders that can help build our business, look at our overall plan, and help us analyze what we’re doing and how we can do better with mutual respect and focus on the mission — a lot of which the organization is actively doing.
I also am enamored by the great thinkers and storytellers of the world — and I’d love the opportunity to connect with some of the world’s great thinkers or storytellers to tell our story and empower them to help us change the landscape that is storytelling for the survivor. Those with burn injuries traditionally aren’t represented in the media or they’re represented in a negative light, unlike the survivors I know and love. Talking to someone who could help influence those who are telling stories with survivors in a more positive light is incredibly important. The strength, the compassion, the community that I know, the world needs to see and hear that story.
Whether in film, television, or literature, survivors have overcome more than anyone can imagine, achieving great things. We want to help change that shift from victim to survivor to thriver — disfigurement has a long history of negative representation, which paints a very different story than what I see every day in our community. For example, I just went to the new Marvel movie, and the villains are the scarred people, and we, survivors, have a different story than that.
Can you share your favorite “Life Lesson” Quote? How is that relevant to you in your life?
I resonate with the quote, “Don’t major in the minors.” I have to practice this daily, by the way. Still, it focuses on the idea that we need to spend more time trying to make big moves and concentrate on what makes the most significant opportunities rather than allowing the small things that aren’t significant or true to who we are or what we are trying to do to distract us.
How can our readers follow you online?
You can keep up with me and the Phoenix Society for Burn Survivors by following us on Facebook, Instagram, Twitter, and LinkedIn.
This was very meaningful, thank you so much. We wish you only continued success in your mission.
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