Not only is Amy Acton, RN, the executive director of The Phoenix Society for Burn Survivors, she relates to the people she serves, as she endured a burn injury.
Acton, who lives in Michigan where The Phoenix Society is based, sustained electrical burns when she was 18. She worked at a marina and was injured by a high-tension wire.
“It was right before I headed to nursing school, so it diverted my attention to go into burn nursing,” she said.
The non-profit organization, said Acton, is the only national burn survivor organization in the United States. It works with survivors, families, health care professionals, the fire industry and donors to support burn recovery, improve the quality of burn care and prevent burn injuries for more than 30 years.
It is hosting its 25th national World Burn Congress Oct. 9 to the 12 at the Rhode Island Convention Center in Providence. Acton anticipates between 900 and 1,000 guests.
“It truly is a heartwarming few days where you leave inspired to reach higher no matter what challenges you may face in your life,” she said. “It includes the whole community, from survivors and their families to health care professionals, and the fire service.”
Station Nightclub survivors, including Gina Russo and Rob Feeney, are panelists. Russo, a Cranston resident, will be speaking at the Phoenix Society’s annual Remembrance Walk on Oct 9, while Feeney, of Plymouth, Mass., will be on a panel called Reflections: The Station Nightclub Fire and the Community Response on Oct. 11.
Together, they will also speak during a segment about survivor’s guilt, as they both lost their fiancés in the blaze.
It’s Russo’s first time serving as a panelist but she has previously attended the event. She thinks it’s a great opportunity to help burn survivors.
“It can be life-changing,” she said. “When you’re a burn survivor, you think you’re the only one in this world who’s suffered. Then, you walk through those doors and meet hundreds. The people you meet and the stories you hear will truly change your path. You say, ‘I can do this.’”
Frank McGonagle, of the East Side of Providence, has helped with the Station Family Fund that the community set up to support individuals impacted by the fire. He will be speaking as part of the panel on Oct. 11.
“The community needed healing, and probably still does to some degree,” he said.
He is also a burn survivor, as he sustained injuries from a car crash in 1966. While he did not cause the accident, the vehicle exploded, resulting in the death of his first wife.
“I was not at fault, but I felt like I was,” he said. “My head was burned, my ears were burned off, and my hair was burned off. My face was only slightly burned, and I had burns on my hands and legs.”
He was hospitalized for two and a half months, and later underwent plastic surgery over the course of a year and a half. At least five years later, he met Dr. Norman Bernstein, the founder of The Phoenix Society.
“That’s how I was introduced to the Phoenix Society,” McGonagle said. “I haven’t gone to all of the burn survivor conferences, but I’ve gone to most of them. The event is amazing. [Survivors] meet other people who have been through similar situations and get a lot of hope.”
That hope is critical, said McGonagle. While grieving, he was also worried about his future and if people would accept him. But he overcame that fear and continued living – and working. He now owns Brenton Productions, Inc., which makes television shows, including two for Discovery Velocity, as well as two for Great American Country.
“I’m enjoying life and having a good time,” he said. “Burn survivors think, ‘This is the end of it for me. I’m disfigured. Who’s going to love me? How can I have a normal life?’ If you go to this meeting, you’ll see hundreds of people who’ve surmounted that problem. The problem is not having hope, and the conference brings hope.”
Dennis Murphy, a Rehoboth man who will be speaking at the World Burn Congress reception, was the former president and CEO of United Way of Rhode Island when the Station fire occurred. The company formed a committee to raise funds and collected nearly $3.5 million.
Soon after, they hooked up with The Phoenix Society to help victims and their families. The year following the Station fire, the committee funded 30 survivors and their loved ones to the World Burn Congress, which was held in Cleveland. He’s thrilled it’s taking place in Rhode Island this year.
“This is going to be a very good thing for our community,” he said. “The Phoenix Society is so knowledgeable and compassionate.”
This isn’t the first time Station survivors and supporters have attended. Acton said survivors participated in the past, and she is looking forward to their return.
“I can remember vividly the first group that came from the Station fire and they provided a sense of hope for me, and it does the same for individuals that come, as well,” she said.
Acton is also thrilled the event is taking place in Rhode Island. She is grateful for the help the Ocean State has provided to make it possible, as Rhode Island Hospital, Shriners Hospital in Boston, along with the Providence Journal, are lead sponsors.
“The community of Rhode Island has been tremendously supportive to help us put this on,” she said. “We move the conference around the country so more people have access. One of the challenges is that there’s limited access to long-term care. The World Burn Congress is a hub of that type of support.”
Dr. David Harrington, MD, Rhode Island Hospital Burn Center director, has treated many survivors and is a major supporter in bringing the World Burn Congress to Rhode Island. He will also be on a medical panel set for Oct. 10, and another for the Station talk Oct. 11.
“It’s really about the idea getting people connected to other people who lived the same events,” Dr. Harrington said, who is also a professor of surgery at Brown University and runs the surgery residency training program at Rhode Island Hospital and Brown. “I think a lot of people who have been injured retreat, and that’s sad because they have lots left to give to society and they have more life to live. We want to make people realize that they are not quite so different.”
Harrington said that while the Station fire was tragic, the aftermath brought many people together. He believes helping burn victims has made him a better doctor.
“Their stories and desire to recover are inspiring,” he said. “It’s a career that you can believe in.”
Survivors in Rhode Island who would like to be connected to resources are to contact the Phoenix Society at 1-800-888-2876. The organization provides 100 direct scholarships for people who wish to attend.
“For someone who has gone through a burn injury, as well as the family, this program provides resource and support for the whole family to heal emotionally,” Acton said. “It can be an isolating experience, so bringing people together to learn from someone who’s been there and has walked in their shoes is a very empowering atmosphere. You can see the hope and possibilities from someone who’s a little further down the road.”
Acton said that medical care has advanced to the point where people are surviving in burn centers 96 percent of the time. Every year, more than 500,000 people receive medical treatment for burn injuries, with more than 400,000 needing additional specialized care.
“We’ve come a long way as far as aftercare and the resources people need to get back to living,” she said. “But survival is not enough. We need resources and support to help people strive long-term so they can get back to their lives and communities. That’s the bottom line for us.”
Visit phoenix-society.org for more information and a full itinerary.