Amy Acton on burn survivors: From tragedy to advocacy

Blog Post created by ryan.quinn Employee on May 2, 2013
Amy ActonAmy is a burn advocate and Executive director of the Phoenix Society. "...the fire sprinkler effort is making a difference and although is a tough battle it is far better than the alternative - the life-long impact of recovering from a devastating burn injury."
Alan Breslau, a burn survivor, recognized the value of peer support after visiting a young boy who was a patient at a burn center way back in the late 60’s. After that experience, he wanted to get involved with a national burn survivor organization, but found that none existed. So in 1977, Alan founded the Phoenix Society for Burn Survivors and went on to work tirelessly for the next 20 some years--because of the power of that peer support visit and the realization that he found meaning in being an ADVOCATE.

Peer support has been the foundation of the Phoenix Society for Burn Survivors for over 35 years now and we remain the only national organization with that as a core focus. We have gone from one man with a vision who developed a loose network of like-minded survivors who provided support, what we are today, a world-recognized organization with nearly 800 trained peer supporters, serving in 56 burn centers in North America.

Through the Phoenix Society’s Survivors Offering Assistance in Recovery program we also realized we are well positioned to add a voice to burn and fire prevention efforts because we know “Why” it is so critical.  Or as the NFPA campaign clearly says – we are the Faces of Fire

Alan Breslau
Phoenix Society's Alan Breslau and child burn survivor

Advocating on Behalf of the Burn Community. The Phoenix Society has long served as the voice that has urged care providers to consider and address the long-term needs of survivors. Alan’s message 35 years ago was that survival alone was not the best outcome---we needed help getting back to living.  Alan also started to testify in front of congress in support of preventing burn injuries, advocating for use of fire-safe cigarette technology as far back as 1981.  So our role in prevention is not new but with a more collaborative approach with our many partners much more effective.

In early 2000, the Phoenix Society assumed a major role in state-level fire-safe cigarette legislation battles by sharing the voice of the survivor along with our national and state partners focused on prevention such as the NFPA. Because of this work together on fire-safe cigarettes we are witnessing a significant reduction in fire deaths related to cigarette-related fires.  As a survivor this has help give a deeper meaning to my experience as a burn survivor and a feeling of empowerment to make a positive change from the tragedy I experienced.   

Making a Difference Together. Over the last several years we have expanded our advocacy efforts by providing specific training to more than 70 advocates who are now serving as a key voice in the battle for use of fire sprinklers in new construction. With this new effort we are assuring that the survivor advocates are emotionally ready for the role and providing focused and specific messages that support our partners in prevention.  Survivors like Rob Feeney  are committed trained Phoenix Society Advocates who are making a difference in our effort to address the fire problem in America. Knowing how to use his personal story with focus and purpose has been a very healing and powerful experience for him.  Being a trained advocate is the first step but we would not use these skills without the engagement of our partners like Common Voices and NFPA.

Alan, a survivor and our founder saw the potential power of this community over 30 years ago in the arena of prevention advocacy, and today we are true members of the team focused on saving lives and providing quality of care for those who are unfortunately impacted by the fire and burn problem in America.  This team approach to prevention and the fire sprinkler effort is making a difference and although is a tough battle it is far better than the alternative - the life-long impact of recovering from a devastating burn injury. 

The Phoenix Society for Burn Survivors will be providing a day long advocacy course on Oct 9, 2013, during the Phoenix Society’s World Burn Congress .