Opening Ceremonies

Phoenix Society’s 2013 World Burn Congress has officially opened!  Opening ceremonies were conducted this morning as an official start to this international gathering of burn survivors, family members, fire service, healthcare professionals and others focused on the need of long-term recovery services.

A stirring rendition of "The Star Spangled Banner" opens the Phoenix Society's 25th Annual World Burn Congress

A stirring rendition of “The Star Spangled Banner” opens the Phoenix Society’s 25th Annual World Burn Congress

A special thanks to the Providence Fire Department, the Fire Service Color Guard led by the West Warwick Fire Department, the Rhode Island Professional Fire Fighters Pipes & Drums, and other fire service members and emergency first responders who provide their service, honor, and pride to the burn survivor community!

Welcome attendees to Phoenix Society’s 25th Annual World Burn Congress in Providence, Rhode Island!

Phoenix Society Members Call to Action! Notify Your Legislators

The Phoenix Society is asking all of its supporters to notify their legislators both of the House and Senate to voice concern about a provision in the bill passed by the House Federal Agriculture Reform and Risk Management Act (H.R. 2642).

The U.S. House of Representatives Farm Bill (H.R. 2642) contains an amendment that would have sweeping effects over the agriculture industry, including the tobacco industry. This amendment has the potential to nullify the important fire-safe cigarette legislation enacted in all 50 states that has significantly helped to reduce fires and related burn injuries.

WE ENCOURAGE YOU TO: contact your own House Representative and Senator as soon as possible to voice your concern about the bill passed by the House HR 2642, specifically Sec. 11312 of the House Bill which has the potential to overturn fire-safe cigarette laws approved by all 50 states in our nation.  We need you to request the removal of this this portion the House Bill.  The message is simple we do not want to lose the gains we have made in decreasing burn injury and death due to cigarette fires in America.

You can find your U.S. Representative and U.S. Senator at www.house.gov or www.senate.gov

You may also want to send your thoughts to these Agriculture Committee members:

The Honorable Debbie Stabenow
Chair, Senate Committee on Agriculture,
Nutrition & Forestry
328A Russell Senate Office Building
Washington, DC 20510
For email:
http://www.stabenow.senate.gov/?p=contact

The Honorable Frank Lucas
Chair, House Committee on Agriculture
1301 Longworth House Office Building
Washington, DC 20515
For email:
https://lucas.house.gov/contact-me/email-me

The Honorable Thad Cochran
Ranking Member, Senate Committee on Agriculture, Nutrition & Forestry
113 Dirksen Senate Office Building
Washington, DC 20510
For email:
http://www.cochran.senate.gov/public/index.cfm/email-me

The Honorable Collin Peterson
Ranking Member, House Committee on Agriculture
2109 Rayburn House Office Building
Washington, DC 20515
For email:
https://collinpeterson.house.gov/contact-me/email-me

Attached is a letter on behalf of the nation’s fire and emergency services   including the Phoenix Society directed to the chairpersons of the Agricultural Committee currently working on resolving differences between the two versions of this bill.

Latest action on the Farm Act was on 8/1/2013 the Senate agreed to request for conference. Appointed conferees: Stabenow; Leahy; Harkin; Baucus; Brown; Klobuchar; Bennet; Cochran; Chambliss; Roberts; Boozman; Hoeven – these appointees will be working on resolving the differences between the House and Senate bill.  

A Continuing Need Inspires a Focus on the Future

Whether you have been a member of The Phoenix Society for years and are renewing your membership, or you are just discovering this wonderful organization, THANK YOU for your support. Your membership gift provides valuable resources to the burn community and gives the tools needed to overcome challenges a burn injury presents.

The following article by Amy Acton, Executive Director, is an excerpt from our Burn Support New, Issue I, 2013, and chronicles the tools one burn survivor used, and how she was empowered to overcome adversity.

As we celebrate our 35th year of service, I ask that you please take just a moment and reflect on your connection to the Phoenix Society and what it has meant in your life. Whether you are a survivor, family member, a donor, or one of our many partners, it is important for us all to stop and celebrate our success together.

With as far as we’ve come in the past 35 years, some might question why we don’t just revel in the accomplishments we’ve made and focus on maintaining what we’ve put into place. But the reality is that as far as we have come in the programming and support for long-term burn recovery, there is still much to do. Isolation, social challenges, and discrimination are just a few of the realities still faced by many families whose lives have been affected by a burn injury.

Lili (far right) with fellow World Burn Congress 2006 Attendees

Lili (far right) with fellow World Burn Congress 2006 Attendees

Lili, a burn survivor and long-time Phoenix Society member, sent us the following email after she had received a cruel letter regarding her appearance.

“I remember so clearly the first time that I attended WBC, I was a painfully shy and insecure young woman. So much was new and scary; facing people, talking to anybody, making eye contact, leaving the security of my house, but most of all, the most scariest and gargantuan challenge was living in a body I had not in my worst nightmares imagined that I would occupy.

I went to WBC at the invitation of my hero and mentor Barbara Kammerer-Quayle. During WBC I was elated, I felt happy, inspired and during those few days I felt comfortable with myself. All was good with me and the world at WBC. It was heart breaking to have to go back home, but I was immensely empowered that first time. I went back to WBC time and time again with the same positive effects as my first time there. WBC gave me the courage and determination to follow my dreams, come out of my shell and live my life as if nothing had even happened.

First I went back to school, then I got married and then I realized what I had always wanted since I was a wee little girl, to have a family. Everything I wanted to create in my life I did it, but not alone. The Phoenix Society’s WBC has been utterly one of the most important life lines I was given after surviving the fire, Barbara Quayle is one of the other and my children and my family and all of the wonderful people I have come across every time I have participated in the World Burn Congress.

Tonight after receiving a letter, I thought about the burn survivors I had met at WBC, the workshops, the peer support and I thought to myself if I had not had the support of the burn survivor community as a whole, I would have unraveled at the sight of the words in this letter. For a moment my knees buckled, my heart ached and felt the old need to retract from an ugly world, but in the same instant I came back to my senses and remembered that in the face of my reality, being a double amputee burn survivor, I have achieved much and overcome much and I credit you all with this inner strength. I thank you all from the bottom of my heart for being there and providing the tools necessary for someone like me to withstand the harsh words that some people in their ignorance might say to me.”

As I read her email, initially I was frustrated and angry that Lili had been subjected to such rude and thoughtless insults about her appearance. As I re-read it a second time, I focused on her main message—that the Phoenix Society had helped to equip her with the tools she needed to live her life with greater confidence and a sense of community. She shared that without the peer support and knowledge gained through the Phoenix Society she would have “unraveled.” Instead she was buoyed by the inner strength and knowledge that she had the tools she needed to deal with the situation and a community of support behind her. This is the impact of our work together.

Lili has participated in our community for many years, has gone on to live a fulfilling life since her injury, and has raised three wonderful daughters. Her growth and courage has always impressed me and although she gives a great deal of credit to the Phoenix Society and our “community,” I know that she has worked very hard personally to grow from her experience. However, Lili’s message did remind me just how important our work is, and it shifted my focus forward to consider the many opportunities that lie ahead for us to make an even greater impact.

The belief of the Phoenix Society is that if we can provide life skills and a community of peer support to burn survivors and their families, they can return to the communities in which they live with confidence and never feel alone.

Lili’s story should energize all of us to remain focused on the future health of the Phoenix Society for Burn Survivors and ensure that more families have access to this community and the growing resources offered here. Each of us has a role to play in this community.

How can you help? By getting involved and helping us to sustain the current programs through volunteering, contributing financially to the organization if you can, and sharing within your community the good work that happens here.

Our collective efforts have made a difference. Just as Lili shared, we are providing the tools necessary to live life.

Our work is too important to stop now.

By: Amy Acton, RN, BSN, Executive Director

How to Talk About It: “Crucial Conversations” with Burn Survivors

This week, the Phoenix Society is attending the American Burn Association (ABA) Annual Meeting, held in Palm Springs, California.  As part of the Aftercare and Reintegration Committee (ARC), we will be participating in a 2-hour forum for burn care professionals entitled “How to Talk About It:  Crucial Conversations with Burn Survivors.”  The attached article is an excerpt from our Burn Support News, Issue I, 2013 and discusses the upcoming forum at ABA.

iStock_000003814138_SmallNearing the end of his shift, a nurse enters his patient’s room for a quick, routine check of his patient’s vital signs. During a casual conversation, his patient, who has experienced third-degree burns over his legs and torso, tells the nurse he is very worried about his future relationships and discloses his fear that he will be unattractive to others. A routine interaction has become a potential “crucial conversation” important in the burn survivor’s course of recovery.

At the American Burn Association (ABA) Annual Meeting this spring, the Aftercare and Reintegration Committee (ARC) will host a 2-hour forum for burn professionals entitled “How to Talk About It: Crucial Conversations With Burn Survivors.” The focus of the forum, which will be held on April 26, is on preparing healthcare professionals to effectively discuss this and other sensitive topics to support burn survivors and their families on their post-burn recovery. Participants will learn to identify topics that can transform into “crucial conversations” important to a burn survivor’s psychosocial adjustment and quality of life after a burn injury.

Forum presenters will share communication skills and strategies that can help professionals engage in and contribute to meaningful discussions with their patients. Barriers to engaging in such discussions will also be shared, as well as best-practice guidelines for healthcare professionals when responding to sensitive questions or initiating difficult conversations. Presenters will include both burn survivors and healthcare professionals, who will share their experiences and recommendations from their own perspectives. Specific strategies and patient centered communication skills for successful crucial conversations will be described and demonstrated.

As part of its ongoing commitment to developing awareness of the needs of burn survivors and their families, ARC offers educational forums each year at the ABA Annual Meeting. In the past, these forums have addressed topics such as body image, social skill development, and peer support—priority areas of ARC and its aftercare and rehabilitative initiatives.

ARC was formed in 2007 as a collaborative effort between the ABA and the Phoenix Society for Burn Survivors. The committee’s diverse membership includes burn care professionals, burn survivors, family members of survivors, and members of the fire service. Its mission is to “coordinate the efforts of the American Burn Association and the Phoenix Society for Burn Survivors to establish standards of aftercare for those impacted by burn trauma in the areas of rehabilitation and reintegration.”

The members of ARC are excited about the opportunity to be part of the ABA Annual Meeting program and host this forum about crucial conversations. Please contact the Phoenix Society for more information about ARC.

By: Karen Badger, PhD, MSW, and Liz Dideon Hess, LCSW

Karen Badger, PhD, MSW, is an associate dean and associate professor at the College of Social Work, University of Kentucky. Liz Dideon Hess, LCSW, is a clinical social worker in the Burn Center at Lehigh Valley Health Network, Allentown, PA. Both are members of the Aftercare Reintegration Committee.

____________________________________________________________________________

Aftercare and Reintegration Committee Forum
HOW TO TALK ABOUT IT: CRUCIAL CONVERSATIONS WITH BURN SURVIVORS
American Burn Association Annual Meeting
April 26 – Palm Springs, California

March is Child Life Month! Wishing all the best to child life specialists everywhere!

ubleongIMG_1718Child Life Specialist have been involved in developing, planning and delivering many Phoenix Society programs and resources.

Markelle Springsteen  was first introduced to the burn survivor population from one of her child life mentors, Donna Trentel.  Donna, a skilled specialist  who has volunteered with Phoenix Society for many years and most recently has been heavily involved in the UBelong program at World Burn Congress, invited her to volunteer at the family burn camp near Estes Park, CO.  According to Markelle, “It was an eye-opening experience to see how surviving a burn impacted the entire family”.   When she took the job at Children’s Hospital Colorado, one of the clinics that she provided coverage to was Burn Clinic.

Markelle is highly skilled at facilitating groups and working with kids and teens. At Children’s Hospital Colorado, she co-leads a Seizure Class, an Epilepsy Camp and she has facilitated a bereavement group for children who have had someone close to them die.  Beyond this, Markelle has been on four Operation Smile trips, where she served as the child life specialist on each mission.  She has volunteered in Kenya, Ethiopia, India and Mexico.  So, last year when The Phoenix Society called me looking for a “rock star child life specialist” to volunteer with the UBelong Program, I knew just who to ask. 

According to Markelle, being a part of Phoenix Society’s  UBelong program was a wonderfully insightful opportunity.  She learned a great deal from the kids and from the highly trained, expert staff. She experienced the impact that a burn can have on the entire family.  The kids also taught her about resiliency.  “The UBelong program draws on strengths of others, normalizes the participants’ experiences and teaches valuable skills.  In my short time with this program, I see how powerful it is for everyone involved and you cannot get this anywhere else.  As a professional, having these experiences also re-energizes me and continues to give me passion for my Child Life role”.  

When asked how the experience impacted her child life practice Markelle said, “I am able to use the resources, training and communication skills that I learned through this program in several areas of my child life role”. Much of what is taught and experienced in the program can be applied to other types of diagnoses and/or injuries. Markelle says that participating in WBC and the UBelong program has advanced her professional knowledge. She will always be mindful of the fact that the whole family is impacted (which is the essence of the Patient and Family Centered Care Philosophy) and the huge impact that peer interactions can have. 

Phoenix Society has continued her involvement as a volunteer by inviting her to help plan UBelong 2013.  As part of the Planning  Committee, she is now part of the team designing the program for Phoenix Society’s  World Burn Congress UBelong program in Rhode Island. Markelle epitomizes the Child Life profession.  She has a strong knowledge of child development and the impact that trauma and illness can have on it. She takes her skills and applies them to any situation. Most importantly, she has an amazing talent in effectively working with children in group situations.  The kids and their families all really connected with Markelle….it’s not hard to see why!

Special thanks to all the Child Life Specialists who volunteer with Phoenix Society and dedicate their daily work to supporting children and families who are recovering from burn injury.  Your specialized skills help kids to thrive again!

Carla Oliver

“Carla Oliver is the manager of the Therapeutic Recreation/Child Life Department at Children’s Hospital Colorado. She has practiced in the field of child life for more than twenty years, with the  majority of her career  dedicated to working with pediatric burn survivors and their families. Carla is a member of the mental health team for the World Burn Congress and has co-presented the parent workshop for 4 years at WBC, and will be presenting it in WBC 2013. Carla is also on the slate to be President-elect of the Child Life Council in May 2013”

Media Stories Increase Smoke Alarm Awareness – But Some Confusion

Recent Media Stories Share Only Part of the Story on Smoke Alarms

On Sunday, March 24, the national newsmagazine TV show, Dateline, is scheduled to air two segments about smoke alarms.  Here is a teaser of what will be aired.

http://todaynews.today.com/_news/2013/03/22/17403247-rossen-reports-kids-can-sleep-through-smoke-alarms-experts-say?lite

The first segment originally aired on TODAY in October and there were many concerns within the fire service about the information given in that report.  The International Association of Fire Chiefs (IAFC) issued a release urging its members to educate themselves on the issue, and criticizing TODAY for dispelling “half-information.”  CPSC and the major manufactures also all provided statements recommending for optimal protection, families should use both types of technology in their home. We are told that Dateline’s re-airing of this piece will re-emphasize how ionization technology works well in most fires and photoelectric tends to work faster in slow, smoky fires. Yet we want to make sure that any partial information is backed up with facts.  The upcoming segment focuses on photoelectric smoke alarms, and includes an interview with a woman who lost family members in a fire, a demonstration with Don Russell from Texas A&M Universityand an interview with the CPSC.

The second segment will focus on smoke alarm research conducted at National Children’s Hospital in Ohio regarding the effectiveness of parent-recorded voice warnings vs tonal warnings in waking children.  As many of you know there are alarms with this function already available.

Some points to keep in mind and to share if asked as a burn care expert :

–       Nearly every national fire expert, recommends having both types of smoke alarm in a home for optimal protection.  Regardless of technology, smoke alarms must pass the same tests to receive UL-listing, and studies show that both types provide adequate warning for egress.

–       Having a working smoke alarm does not guarantee that you will survive a fire – it increases your likelihood by 50%.  There are still many unknowns, which is why it’s so important that families install smoke alarms throughout the home, replace batteries every year and alarms every 10 years, and have an escape plan so they know what to do when an alarm sounds.

–       Regardless of technology, homes that do not have enough alarms are still under-protected.  Recent surveys show that three out of four homeowners don’t know where to place smoke alarms.  The NFPA recommends placing smoke alarms on each floor and inside and outside of sleeping areas.  IAFC along with Kidde, created a toolkit to help remind fire departments and the community about the proper locations for alarms.  It is available at www.smartalarmchoices.org

–       We asked Kidde a leading manufacturer of residential fire safety products about the technology, Kidde states they review industry data, trends and scientific studies in order to advance technology and create solutions to further protect people and property from fire and related hazards.  Recent examples include:

  • Launching a combination smoke/CO alarm with voice notification nearly ten years ago, based on research showing that voice may be more effective at waking children (the teaser report states they are not available yet)
  • Launching a wireless smoke alarm in 2005 to help bring the benefits of interconnection to nearly 100M homes, based on research showing that average time to escape a home has dropped from 17 minutes to three minutes
  • Launching a line of sealed-in battery smoke and CO alarms in 2012/2013 to help address the issue of battery removal and fire deaths; nearly 2/3 of all fire deaths occur in homes without alarms or with no working alarms, mainly due to dead or missing batteries.  This product line also eliminates homeowners’ top fire safety annoyance – low battery chirps – and was designed with location-based features to make it easier to choose the right alarm for the right location.

Dateline airs at 7pm ET and has an average audience of 6 million viewers.  It is critical that the consumers understand the facts about smoke alarms and it is also an opportunity for us to further educate the public on the topic of prevention, including those building new homes to add fire sprinklers to increase the chances of surviving a fire from 50% to 80%.

Thank you for your effort in sharing this important information with your family and friends to prevent further burn injuries and deaths.

Amy Acton
Executive Director

Spring Cleaning

2013-03-15_10-54-34_468In cleaning out a long-ignored cabinet this week, we discovered an old letter to the Phoenix Society for Burn Survivors, from our then 41st President, George H.W. Bush, extending his warm greetings to the Phoenix Society’s 3rd Annual World Burn Congress, which was being held in Philadelphia, Pennsylvania.

As readers may have seen in the news or online this past week, former President, George H.W. Bush has recently released an updated version of his book “All the Best, George Bush:  My Life in Letters, and Other Writings”.  His book includes many personal letters and other personal notes written during and after his term in office.

Many of our US Presidents write personal letters to friends, family, and to private citizens or organizations, for various reasons throughout their term in office.  Although we know it is a common practice, it is also uniquely exciting to receive a letter from the office of the President of the United States.  Sad to say, the letter to the Phoenix Society wasn’t shared in President Bush’s memoirs, however, we thought we would share his thoughts with our readers.

The letter dated May 30, 1990 includes the following message:

I am pleased to extend my warmest greetings to everyone attending World Burn Congress III in Philadelphia.  I am especially pleased to welcome our foreign visitors.

Tragically, every year thousands of children and adults in countries around the world lose their lives as a result of burn accidents.  Other burn victims undergo multiple operations and endure enormous pain to repair their injuries.  Yet through the dedicated efforts of individuals such as those attending this conference, progress is being made in treating burn injuries.  By studying the causes of burns to find ways to prevent them, you are contributing to this encouraging progress.  Your efforts are being supported here in the United States by significant research programs underway at the Centers for Disease Control.  As we work together, we can help ensure that important strides will continue to be made in developing not only methods of preventing burns but also techniques to treat burns.  I commend each of you for your commitment to achieving these goals.

Barbara joins me in sending our best wishes for a productive conference.  God Bless you.

George Bush

It is hard to believe that we are celebrating our 35th anniversary as the Phoenix Society for Burn Survivors, and our  25th anniversary of our annual World Burn Congress.  WBCblogpicWe have made significant progress since that 3rd conference, such as advocating on behalf of the burn survivors to improve psychosocial care, education to assist with acceptance and recovery, and developing a model program to deliver peer support to assist all those affected by burn injuries.  We look forward to furthering our progress in the future, and seeing so many of you at the Phoenix Society’s WBC 2013 held in Providence, Rhode Island this year. 

Warm wishes,