Burn Support Magazine - Phoenix Society · Phoenix Burn Support Magazine | 2 | Issue 1 2017 Healing Together: When Multiple Family Members Are Injured by Burns By Nicole Perry, BA,

Burn Support MagazineBurn Support MagazineIssue 1 2017

Moving Forward From Guilt to Gratitude | 6

Healing Together | 2

Burn Injury by Abuse

Caring for the Caregiver | 8

Misty DeChant Pink Bridge Photography Bend Oregon

Phoenix Burn Support Magazine | 2 | Issue 1 2017

Healing Together When Multiple Family Members Are Injured by BurnsBy Nicole Perry BA CCLS

On the evening of January 15 2013 Cheri Kent and her two children Quincey and Kennadey followed their usual evening routinemdashafter both children took a bath they settled into bed But 15 minutes later the familyrsquos apartment suddenly exploded

An Entire Family Faces RecoveryCheri ran throughout the apartment frantically searching for her children but was unable to find them ldquoI got turned around and couldnrsquot figure out where I was or even how to get outrdquo she recalls ldquoIn that moment I thought I was going to dierdquo Suddenly Cheri felt someonersquos hand on her headmdasha neighbor had entered through a window to help her escape Another neighbor Cheri later learned had helped Quincey and Kennadey find their way out

All three family members who were taken to the University of Alabama Medical Center Birmingham for treatment had significant burn injuriesmdashthe tragic result it was later determined of a natural gas leak that had been ignited by the apartmentrsquos furnace Quincey who was 7 years old had sustained burns to his face hands and right arm and shoulder Six-year-old Kennadey had suffered burns to the top of her head her shoulder the back of her thigh and on several fingertips The children spent the next 2 months in the hospital Cheri whose burns covered her arms buttocks and left hip leg and foot required an additional month of hospitalization

The physical injuries were just one part of the major life-changing impacts of the fire Cheri remembers feeling incredibly depressed during the first portion of her hospital stay She didnrsquot allow visitors because she didnrsquot want to see or talk to anyone Cheri acknowledges that she was deliberately uncooperative and uncompliant with her care as a result of her anger and disbelief of the situation Like many survivors struggling to cope she controlled the few things that she could

A First Glimpse of Community Brings HopeIt wasnrsquot until Cheri saw other burn patients for the first time in the physical therapy gym that her attitude changed She finally realized that other people were facing similar challenges and she began to feel lucky that she was still alive This experience gave Cheri some perspective on her injuries and motivated her to focus on her own recovery Her cooperation with the nurses and therapists increased and she started to see herself making small progress in regaining her strength and healing

Burn Congress a priority Cheri applied for and received the Phoenix Societyrsquos George Pessotti Scholarship that enabled she and her children to attend the Congress last fall in Providence Rhode Island The Phoenix World Burn Congress experience was life-changing for Cherimdashshe felt incredibly welcomed and the workshops provided her with new skills and tools that she is using today in her own recovery and healing Quincey and Kennadey loved participating in the Phoenix UBelong Youth and Teen program and both children gained new friendships and learned valuable skills to help guide their own healing journeys Quincey shared with his mother that the best part of the program for him was learning social skills including rehearsed responses and methods for dealing with bullying teasing and staring

During the 3 months Cheri was hospitalized she had not had an opportunity to see her children although she was able to stay connected by talking to them on the phone After she was discharged reuniting presented challenges and brought up emotions for the entire family The children were hesitant to see their mother for the first time since the accident and when Cheri finally saw them she realized the permanence of their injuries

ldquoIt really hit me then that they were hurt and injured and I couldnrsquot do anything to help It caused me to go into a state of depression all over again because of the guilt I felt for not being able to save themrdquo Cheri recalls She was able to work through some of these feelings with the help of a counselor but like many parents in similar situations Cheri still struggles with feelings of guilt and helplessness to this day

A Return to School Brings ChallengesReturning to school was an important step in healing for both children whose teachers and principal had visited them while they were hospitalized Upon the siblingsrsquo discharge home school staff collaborated with the local fire department to facilitate a school reentry program Quincey and Kennadeyrsquos fellow students were very welcoming embracing and supporting the young burn survivors upon their return to the classroom However while Quincey wore his face mask and pressure garments openly his sister chose to cover her garments with long sleeves Nonetheless with the help of the school reentry program and support from the school staff the first year back to school was a seamless transition and empowering for the entire family

Things changed the next year when a new student seemed to alter the school experience for Quincey It was quite some time before Quincey mentioned anything to his mother who had begun to notice a significant change in her sonrsquos mood Eventually one afternoon he revealed that he had been getting bullied The other boy had consistently cursed at Cherirsquos son making derogatory comments about his face mask laughing at him and telling Quincey he deserved to be burned At the time Quincey was unequipped for addressing the bully and Cheri suspects that he had delayed telling her about it because he was embarrassedmdashbehavior that is not uncommon for targets of bullying Advocating for her son Cheri reached out to the school for additional support with the situation Despite many school attempts to intervene and stop the

bullying behaviorsmdasheven moving the bully to a different classroommdashultimately Cheri felt it would be best to move both Quincey and Kennadey to a different school (closer to their new home) for a fresh start There the children have been able to find a more comfortable daily balance which has been anxiety-free and completely supportive thus far

A Family of Survivors Learn to Thrive Cheri first learned about the Phoenix Society in late 2015 while searching online for local support groups The 2015 Phoenix World Burn Congress had just wrapped up and the conference slideshow was posted on the Societyrsquos website Viewing it Cheri was inspired by the support healing and peer support connections she saw there Determined to make attendance at 2016 Phoenix World

continued on page 4

Cheri Kent with her son Quincey and daughter Kennadey

Tools Resources Provide Support for GrowthThe skills that the family gained at Phoenix World Burn Congress and Phoenix UBelong are invaluable for anyone who has been affected by a burn injury If Quincey had had these tools when he was being bullied at school he may have had the confidence needed to address the bully or tell his mother or another trusted adult sooner Cheri recommends that parents foster open honest communication within the family making it easier for a child to speak up when a situation such as bullying is bothering them Modeling this open communication as a parent through advocacymdashcommunicating early and often with the school or leadersmdashis also essential

Using the tools that Cheri and her family learned at Phoenix World Burn Congress and the resources available through the Phoenix Society can provide a child and his or her parents with valuable support throughout the process Cheri hopes that she Quincey and Kennadey will be able to attend another Phoenix World Burn Congress so that they can continue to strengthen the skills and support that she and her children have already gained

Phoenix Burn Support Magazine | 4 | Issue 1 2017 Phoenix Burn Support Magazine | 5 | Issue 1 2017

Texas Health Presbyterian Hospital Dallas

Are you a burn survivor who is interested in becoming more physically active

If so you may be able to help us find out how exercise could benefit you and fellow burn survivors

About the study

This study is being done to understand the benefits of exercise in burn survivors This study will require travel to Dallas for 4 - 5 days before and after 6 months of exercise training Enrolled participants will be compensated for their time gym membership fees will be reimbursed and all travel related expenses will be covered

You may qualify for the study if you

bull Are 18-60 years old

bull Have experienced a burn injury more than 2 years ago

bull Have experienced a burn injury covering at least 20 of your body

bull Have well-healed burn injuries

bull Are able to exercise

bull Able to commit to a 6 month exercise training program (will be provided)

There are additional criteria Please contact us to find out if you qualify for this study

This research study is funded by the National Institutes of Health (NIH)

If you or someone you know is interested in learning more about the Exercise in Burn Survivor study please contact

Institute for Exercise and Environmental Medicine (IEEM) at Texas Health Presbyterian Hospital Dallas

7232 Greenville Avenue Dallas Texas 75231

214-345-4737

ieemthermoregulationTexasHealthorg

wwwieemphdorg

Doctors on the medical staff practice independently and are not employees or agents of the hospital except resident doctors in the hospitalrsquos graduate medical education program EP ETHD137601A 1216 EPExercise in Burn Survivors (IRB STU 042014-060)

Is my child being bulliedIt is important to note that bullying behaviors differ from the rude or mean behaviors we sometimes see in children Rude behaviors involve unintentionally saying or doing something that hurts another person Rude behaviors are usually unplanned and are based on carelessness or poor manners but they are not meant to actually hurt someone With children rude behaviors might include interrupting someone who is speaking burping in someonersquos face or cutting ahead in the lunch line On the contrary mean behaviors involve purposefully saying or doing something to hurt another person once or twice Examples include criticizing someonersquos appearance or intelligence or coolness Mean behavior in children is usually motivated by angry feelings or even jealousy and the mean person usually feels a sense of guilt or remorse afterwards1

Bullying however involves an imbalance of power between two people The bully seeks to intentionally make another child (the target) feel inferior often causing shame and embarrassment to the target The bully finds a sense of power and satisfaction in making the target feel so bad and the bully has no sense of remorse for his or her behavior To be classified as bullying the behavior must be intentional aggressive and repeated over time

Types of bulling include the following bull Verbal bullyingmdashUsing words that intentionally hurt

the target and includes insults teasing and putting someone down Verbal bullying would include repeatedly making fun of a burn survivorrsquos scars or repeatedly telling someone they are ugly fat or lame for example

bull Physical bullyingmdashPurposefully and aggressively causing physical harm to the target such as hitting kicking punching slapping or tripping

bull Social bullyingmdashInvolves using relationships to socially isolate the target including spreading rumors telling others not to be friends with someone purposefully leaving someone out and publicly embarrassing another person

bull CyberbullyingmdashUsing the internet phones or other technological devices to hurt or embarrass another

person This might include texting mean photos or posting something mean on social media

How can I help support my childChildren and teens may try to downplay that theyrsquove been bullied due to the embarrassment and shame they feel By keeping an open dialogue with your child at home and providing education about bullying behaviors your child will be more likely to seek your support and guidance in the event of bullying

Practicing skills with your child in advance can help your child to feel prepared to address a bully You can teach your child how to respond to a bully with these 3 simple steps bull WALKmdashYour child has the power to walk away from

the bully Empower your child to remove him or herself from the situation if possible

bull TALKmdashSpeak up to the bully and tell the bully to stop If your child feels safe enough he or she can stand up straight look the bully in the eye and use a firm tone of voice to tell the bully to stop Your child might say ldquoLeave me alone You are being a bully and I do not have to take this behaviorrdquo

bull REPORTmdashTell a teacher parent school counselor or any other trusted adult so further adult intervention can be provided

If your child does report bullying to you you have the right to advocate for him or her Ask the school for a specific plan of action and be sure to follow up on the progress of this plan with both your child and the school

For more information on social confidence and control check out the Phoenix Societyrsquos ldquoSTEPSrdquo from the Beyond Surviving Tools for Thriving After a Burn Injury program at wwwphoenix-societyorgresourcesentrybeyond-surviving-tools-for-thriving

Reference1 Whitson S Rude vs mean vs bullying defining the differences

Huffington Post ndash The Blog 2012 (updated 2016) Available at httpwwwhuffingtonpostcomsigne-whitsonbullying_b_2188819html Accessed November 17 2016

Nicole Perry is the Phoenix Societyrsquos Program Manager for Youth and Family Services

Recognizing and Responding to Bullying

The Alan and Delwyn Breslau Award is presented to an individual who has through a collaborative spirit significantly enhanced the ability of the Phoenix Society to fulfill its mission of peer support education collaboration and advocacy

To nominate an individual for this yearrsquos award submit your name and address as well as your nomineersquos contact information a letter detailing why your nominee should be selected and any other relevant information no later than July 1 2017 by email to andreaphoenix-societyorg The 2017 Breslau Award will be presented at Phoenix World Burn Congress this fall

Seeking Nominations for the 2017 Breslau Award

Phoenix Burn Support Magazine | 6 | Issue 1 2017 Phoenix Burn Support Magazine | 7 | Issue 1 2017Phoenix Burn Support Magazine | 6 | Issue 1 2017

A Parentrsquos Perspective

Moving Forward From Guilt to Gratitude

By Alicia Assad MAPP HC

cover it up take it back or pretend it never happened Indeed Williamrsquos scars force me to stand face to face with my imperfections and vulnerability every day

There was a time where the scars on my sonrsquos body begged to become a roadmap of pain and sadness permanently etched on his body But they didnrsquot Williamrsquos scars no longer represent what is sad because one day I made a choicemdashnot necessarily because I wanted to but because I felt I had to for the wellbeing of my boy A pivotal moment in my recovery journey is when I realized that if I didnrsquot come to terms with my own emotional scars as a result of the injury my boy might not be able to cope Children need their parents to model what we expect of them If I wanted my boy to believe his physical scars were symbolic of his bravery then I had to think the same of mine The day I realized my pain and grief would further harm my boy I shed it off like a dirty set of clothes and made the choice to move on Then I shouted my new more positive perspective on the matter to the world until I wholeheartedly believed it myself Now I look back with gratitude at the transformation this crucial choice to let go of guilt made in my life

In fact some of you may have seen my articles talking about how I found blessings in my darkest moments and resilience in the aftermath of adversity Since finding myself free from the stranglehold that is guilt I now strive to own the story I cannot change Every day I make the choice to seek the beauty in what was hard in what still sometimes is hard The words I write are now laced with gratitude and resilience but I still maintain reverence for the time I suffered This was a time when any well-meaning individual with positive and encouraging words would have further alienated me I might have responded ldquoHow is it possible to move forward I donrsquot know how I will ever forgive myselfhelliprdquo

Some of you might feel stuck in a negative place and I wonrsquot try to talk you out of your authentic emotions I think we all need to fully process what is negative before we can move forward and find what is positive I can tell you that my experience of guilt didnrsquot last forever Having emerged in a healthier place my marriage is stronger and my boy is thriving Our emotional wounds have healed leaving behind the memory of a time we were forced to be brave and strong a time that bound us together and woke us up to what is really important in life I pray that you find this peace too and while I say it was my choice to move on it is a continued process of forgiveness and acceptance that I still dance with every day

I would be doing my readers or any parent suffering guilt over an accidental injury a disservice by suggesting that I am fully healed Rather I move forward as a woman with self-compassion because I have found this is more productive than the whole guilt thing Also I remain in a place of vulnerability by admitting my stumbles and talking about those negative emotions I have experienced because this might resonate with someone who is suffering To believe that my story can help someone else gives me a renewed sense of hope

Our second-opinion doctor was right I needed to pull my head out of the sand and face the cold hard truth that life brought me a situation I couldnrsquot remedy Eventually the acceptance I found carried me to a better place where I experience more gratitude than sadness and more compassion than anger But on the matter of scars being ugly I humbly disagree with this burn specialist I believe the scars my son carries are beautiful because they are symbolic of resilience the bravery William has shown in adversity and the strength I have found in acceptance

As the parent of a burn survivor I am fortunate to have found the Phoenix Society early in my journey to recovery The stories of resilience and hope I read about other survivors when I was struggling became a beacon of light in my darkness We can allow what happens in our lives to break us or we can take the facts and spin them into a story that has the power to propel us forward I never imagined I would have such a keen awareness about burn injury or a passion to make a difference for those who are walking this journey but here I am sharing some of my most vulnerable moments with all of you I am immensely grateful to know I am not alone and I believe that collectively our stories of resilience and hope will continue to bring comfort to those walking this journey with us

Alicia Assad earned a Master of Applied Positive Psychology from the University of Pennsylvania and Health Coach certification from the Institute for Integrative Nutrition with the intention of helping individuals achieve optimal health and wellness However after surviving postpartum anxiety multiple pregnancy losses and her sonrsquos burn injury she contemplates how concepts such as optimism and gratitude can lead to growth in the aftermath of adversity For more visit her website wwwbeautifulcrisiscom or follow her on Facebook AliciaAssadWrites

Now I look back with gratitude at the transformation this crucial choice to let go of guilt made in my life

Yes I can tell you I am better I have found myself in a place of gratitude where I recognize an abundance of blessings in my life But the whole guilt thing following Williamrsquos injury was uglyhellipfor a long time I wallowed in remorse letting sadness seep into my pores and then wrote a whole memoir about an experience laced with themes of guilt For a long time martyrdom was my solace I felt I had to prove my worth as a mother eager to try harder because I wasnrsquot enough as I was I was the mother who failed the little boy she brought into the world and I needed to make up for this mistake I experienced deep shame because I could trace my action or perhaps inaction back to the accident Then I could not fix William

ldquoMrs Assad you need to accept that your son has suffered a burn injury and is badly scarred Scars are ugly We donrsquot like them but we canrsquot take them away They are a part of who your son is now This burn is severe you are lucky William is alive That is all you should be focused on right nowrdquo

The voice of the doctor we sought out for a second opinion on Williamrsquos burn injury echoed in my head We were home from the burn unit and through the immediate crisis after Williamrsquos scald burn injury entering a new phase of the journey recovery My coping mechanism at the time was extreme optimism (aka denial) which led me to believe I can right this wrong I can and will do anything to fix my son Hence I fully expected to leave this appointment with a second opinion on how to restore William to the perfect 2-year-old he was before his injury

Needless to say hearing from a renowned burn specialist in New York City that his only remedy for the injury was acceptance left me stunned On the car ride home my shattered determination led to frustration and then anger After arriving back home I ran upstairs slammed the door of my bedroom and screamed This angry cry escaping my body was far worse than any of my childrenrsquos tantrums It was a feeble attempt to capture the depth of my anguish and only sent me further into despair How weak and pathetic my voice was My initial scream wasnrsquot loud enough so I took a deep breath and tried it again channeling all the negative emotion that was pent up inside of me as though I could spew it out and get rid of it Even though I pulled from the deepest layer of my core I couldnrsquot summon the hurt and sadness I suddenly felt and wanted to release My frail cry signified how helpless and weak I really was Williamrsquos burn injury was still going to shift and change as it progressed over the next year but the menacing scar I saw down his neck across his chest and down both arms was a good indication of what my son would carry for the rest of his life

I wish I could say my cries released the pain from my world but they didnrsquot Waking up to the realization that

my son would forever be changed as a result of the accident opened the floodgates of guilt and I found myself stuck in a dark place That pit in my stomach the sensation that I was responsible for something really horrible cast a gray tone over my world Those angry questions haunted me the ldquowhat ifsrdquo the unfair and judgmental ldquowhy me why not that momrdquo Then the ldquoshouldrsquove couldrsquoverdquo banter ignited the blame game between my husband Eddie and I When your child suffers an accidental injury of any kind it can send a ripple effect through the entire family If you allow it guilt has enough power to quietly erode the resolve of the strongest family unit

Eddie and I fought this battle hard Today we are in a much better place and recently we were at an engagement party where someone asked us ldquoHow are you doing with the whole guilt thingrdquo In unison enthusiastically and authentically we responded ldquoGood We are really goodrdquo

Alicia Assad with her children (l to r) Henry Catherine and William

8 Ways to Care for the CaregiversBy Carly Bowers

Growing up my life was neat and tidy So many things were clear-cut and simple For so long I was a student a daughter and a friend I played those roles when the time called for it and it seemed easy to me Then I became a mother and suddenly was thrust into a world in which I was everything to my precious girl I wasnrsquot just her mommdashI was her chef nurse chauffeur teacher disciplinarian friend and number one fan

Then I got married and roles became even less neat than they once were I became a wife friend partner co-decision-maker and once again a number one fan Then my husband David suffered a severe burn injury and the roles swirled and melded more than they ever had in my life I was now a mom with all the responsibilities that role brings a wife with all the responsibilities that role brings and a caregiver This was uncharted territory for me and adjusting to this new role was one of the hardest things Irsquove ever done Juggling all these roles was exhausting

Most people including me who are called to care for a family member are not trained professional caregiversmdashwe were just thrown into this role because of lifersquos unexpected twists and turns We try to do our best but sometimes feel like we arenrsquot doing it well or because we donrsquot have the necessary tools we burn out due to stress and exhaustion

Following are 8 helpful hints Irsquove gathered from my own personal experience These are practical ways that you can care for yourself if you are a caregiver or ways you can help a friend or family member who has taken on the daunting responsibilities of a caregiver

1 Learn as much as you can so you can be your loved onersquos advocate Trust your instincts Speak up if you need to If you have a concern or notice something that just doesnrsquot seem right it is okay to speak upmdashand do so immediately You should speak to someone who is directly involved in the care of your loved one such as his or her doctor physical therapist burn nurse or nurse manager You should be as specific and clear about your expectations as possible so the hospital knows how to help Most hospitals do want to help resolve your concerns as quickly as possible For example if you see something with a wound or bandage that doesnrsquot seem quite

Remember for all the hours each week that you dedicate to others you need to dedicate a few here or there to yourself

right ask for someone to specifically check on it and give you options for monitoring or treating it Or if you are concerned about being ignored or mistreatedmdashit is okay to be assertive When David was in the burn unit an aide there was a bit brash and tended to be a little too rough with her patients I went to the nurse manager and explained my fears and concerns and told her that I didnrsquot want this particular aide working with my husbandmdashever My concerns were heard and changes were made But if you donrsquot receive the resolution you need contact the hospitalrsquos customer service or patient advocacy office for further resolution You can also seek additional resolution or assistance after your loved one has been discharged from the hospital

2 Get rest eat and get some fresh air every day When your loved one has been admitted to the hospital the whirlwind of activities occurring in the hospital and ongoing responsibilities at home can be overwhelming To handle the increased demands and stress on you be sure to bull Eat regularly bull Take a break and go for a walk Simple exercise

and activity can help alleviate both the physical and emotional impact of stress to your body

bull Go outside and get some fresh air Just a shift in the physical setting (from the hospital room to a different setting) can help give you a ldquomental breakrdquo

bull Set up a schedule for needed sleep Sleep is critical for your physical and emotional health and will help you maintain your physical and emotional strength so you can best care for your loved one Finding family or friends who can help with the rotation of coverage in the hospital is one way to be sure you can get some needed rest

A family friend would make sure I did these simple things when David was in the hospital They might seem like no-brainers but when yoursquore in the waiting room itrsquos easy to get caught up in the stress of the moment and not take care of yourself

3 Take care of yourself not only physically but emotionally and spiritually Meditate Pray Take up yoga Watch an inspiring movie each week Pick what works for you It sometimes felt like I was being selfish by putting my needs ahead of Davidrsquos or my kidsrsquo However if I never took care of myself I wouldnrsquot be of any use to any of them Remember for all the hours each week that you dedicate to others you need to dedicate a few here or there to yourself Itrsquos not being selfishmdashitrsquos being practical I really like the saying ldquoIf Momma ainrsquot happy ainrsquot nobody happyrdquo

4 Help your loved one maintain as much of his or her independence as possible When you allow your loved one to do some things without assistance he or she regains a sense of dignity and control and it allows you to do one less thing I used to purposefully turn my husbandrsquos t-shirts inside out when I was folding laundry so he would have to turn them the correct way before trying to dress himself I wasnrsquot doing this to be mean He needed to move his hands and arms and this was a way he could get in some extra therapy but it also gave him a sense of accomplishment I also remember how hard it was to stand back and watch David struggle with feeding himself It was such a slow and painful process but I knew he had to do it on his own and that I couldnrsquot simply swoop in and do it for him I needed to find times when it was safe for me to step back and let him do things

5 You donrsquot have to do it all Ask for help from family and friends Better yet be willing to accept help Trust me I know this is not an easy thing to do We like to be the one helping others as opposed to having people help us but donrsquot let pride get in the way Accept assistance with transporting kids to their activities allow church members or friends drop off meals and welcome offers to help with yardwork housework or even laundry Be sure to assign the kids appropriate tasks

If possible consider hiring medical staff or other professionals to assist with the home healthcare requirements such as daily wound care physical therapy and bathing We hired aides and nurses to assist with these tasks because I needed to step back from solely being in ldquonurse moderdquo all the timemdashand it allowed me the opportunity to step back into being Davidrsquos wife

6 Get support from counseling or support groups It is difficult to effectively care for your loved one if you are suffering emotionally and physically too Find a network with others who have experienced a similar situation It helps just to know yoursquore not the only one who has ever been through this Within the first year we found the Phoenix Society for Burn Survivors which offers Phoenix SOAR a program that provides burn survivors and their loved ones with support from a trained peer supportermdashsomeone whorsquos ldquobeen thererdquo (For information about how to connect to a

Phoenix SOAR peer supporter go to wwwphoenix-societyorg or call the Phoenix Society at 800-888-2876) Teaming up with them gave us an instant sense of community We belonged simply because we had all gone through a similar experience I didnrsquot have to explain anything to anyone because they knew what we were struggling with on a daily basis

If you are struggling with emotions that feel out of control emotions that donrsquot seem to be getting better or physical signs of illness or stress donrsquot hesitate to seek professional help from your physician or another appropriate professional Remember there is nothing wrong with asking for help

7 Recognize that itrsquos okay to have feelings of anxiety or worry anger guilt fear despair Rather than hiding or suppressing your true feelings itrsquos better to deal with them Grieve over what you have lost Find what is healthy and fits you best in terms of expressing or coping with your feelings This can include such practices as talking with a close friend compiling a list of fears vs realistic options or writing in a journal Maintaining a journal helped me sort out my feelings and kept me from suppressing my emotions Sometimes I didnrsquot feel like I could voice my feelings to anyone because I wanted to make sure everyone thought I was coping and doing well but to deal with my emotions I needed to release them on paper

It is difficult to effectively care for your loved one if you are suffering emotionally and physically too

continued on page 13

8 Stay connected to your friends and life outside of taking care of your loved one It is okay to take a break as hard as it might seem Donrsquot cut yourself off from the outside world which is tempting because you are so overwhelmed with everything that needs to be done The following are suggestions for maintaining these important connections

bull Go out for lunch with a friend or have them bring lunch to you so you can just visit

bull Call a friend parent or other close relative just to chat Take time to reach out and hear a friendly voice

bull Take a mini-trip (After David was out of the hospital a friend arranged for me to take a two-day mini-trip to her homemdashshe set up spa treatments and we went to dinner While I couldnrsquot forget everything that was going on back home it gave me a mini-break for a few special days)

Megan Baldonado is above all strong and resilient Her inner light shines brightly and before you ever know anything about the path she has traveled or the hardships which have tested her strength you know she is strong

On August 7 2011 Megan was packing her bags to move on with her life Like many troubled relationships the one she was in had not started out unhealthy Yet layers of issues eventually drove Megan to plan an exit Her ex-fiancersquo had other ideas When Megan entered their apartmentrsquos garage she found that he had spread gasoline-soaked rags throughout and was holding a lighter in his hand As she realized what was going on and tried to run ldquoa bright blue flash occurredrdquo recalls Megan ldquoI was able to roll backwards and run out before I realized how bad I was My main concern was getting others out of the apartment complexrdquo

Megan was the victim of severe burns intentionally caused by another The resulting injuries primarily to her extremities covered 53 percent of her body while her perpetrator she says escaped with injuries to less than 1 percent of his

Physical Healing Was Just the BeginningMegan spent several months in the hospital including a transfer to her home state to be closer to family She endured three major grafting surgeries months of outpatient rehabilitation and additional follow-up including contracture releases

Megan says that her physical healing was just the beginning ldquoI cannot count the hours of occupational and physical therapyrdquo she says ldquohowever my main therapy has been psychologicalrdquo From the outset she says she focused on ldquomultidimensionalrdquo healing

Resilience Defined Megan Baldonadorsquos StoryBy Jessica Irven MS LRTCTRS CCLS

Gaining Wisdom in the ProcessRecognizing the wisdom she has gained in her journey of healing Megan says she would have liked to have been able to offer herself the following advice along the way bull Before the injurymdashPay attention to all the warning

signs and donrsquot try to work on or fix a relationship that is broken and unfixable Get out early while you still can because it will only get worse

bull While in the hospitalmdashKnow it will get better Although you and your family will endure a very bumpy road they will not leave you or abandon you They will be there and sacrifice for you Your family will do the best they can with the knowledge resources strength courage and love that they have

ldquoI was still in the hospital when a psychologist began helping me because I knew it was very importantrdquo She continues to see an EMDR (eye movement desensitization and reprocessing) counselor and psychologist Megan says that while she is forever changed by her visible physical scars it is the ldquoscars on the insiderdquo that have been the biggest challenge Having made a lot of friends who were accidentally burned Megan says she sees differences in her experience ldquoRadical acceptance is definitely harder for me With an accident you canrsquot really help the situation but dealing with somebody especially somebody you love doing this to you it is a different mental process on top of the physicalrdquo

Survivors such as Megan and their families can also experience re-traumatization with every step of the legal prosecution process as feelings re-emergemdashPTSD triggers abound and help is crucial For Megan just like every surgery having to testify brought back PTSD depression and anxiety She describes the trial as her biggest emotional setback and says that the aftermath of the legal process took a significant toll weighing on her more and more over time As in Meganrsquos case the perpetrator may not admit to causing the injury She recalls the tremendous struggle and multiple waves of legal action that were an attempt to effect a significant amount of prison sentencing for her perpetrator

Moving Forward Despite SetbacksUnderstandably a step in healing for Megan has been coping with anger She found an outlet for expressing that emotion in a boxing bag prescribed by her psychiatrist ldquoWhen anger finally showed itself I went at it on my boxing bagrdquo says Megan adding ldquoIt was so bad that I actually broke my wristrdquo

But Megan also worked diligently to return to activities she had previously enjoyed ldquoI did my hardest to make sure I couldrdquo she says ldquoI walk run bike snowboard and everything else I was never supposed to do againrdquo In recognition of the 1-year anniversary of her injury for her mom she participated in a duathlon (a 125-mile bike ride and approximately 5k run) Today Megan also enjoys working out music poetry painting and drawing She has also gained a great sense of fulfillment by volunteering for the same adaptive sports group that helped her return to snowboarding

More than 5 years after her injury Megan is grateful for her many sources of support including her family roommate boyfriend and a service dog that stays by her side She credits her faith in God in giving her encouragement

Megan is extremely appreciative for the survivor support she has found through both the Oregon Burn Concern and the Phoenix Society for Burn Survivors as well as the experiences she has had in the LEAP therapeutic wilderness program and at Phoenix World Burn Congress

She credits her occupational therapist Helen Christians with getting her to open up and show her scars and introducing her to these organizations and programs For Megan these sources of support were crucial

ldquoWithout all of these avenues I would not be as strong and courageous as I am todayrdquo says Megan ldquoI have support whenever needed due to all of my avenues and I have learned that I am thankful and blessed If I was never burned I would not know all the amazing people I have met I would not have traveled to [Phoenix] WBC to places Irsquod never been I would not have learned as much as I have And I would not have the faith strength courage determination wisdom knowledge passion and life that I do nowrdquo

bull Try a ldquogirls night outguys night inrdquo Our friends pampered us occasionallymdashthe men stayed at the house with David grilling steaks and watching action movies while I went out to dinner with my girlfriends These can be memorable moments that give you and your spouse a chance to experience laughter and ldquonormalrdquo social gatherings

Although this list is simple my prayer is that it may offer you some practical help for a situation that may seem too big to handle Taking care of others is no small task but itrsquos a precious one and itrsquos important for caregivers to take care of ourselves so we can continue to take care of our loved ones If we are unhealthy we canrsquot meet the needs of others

Carly Bowers is the wife of a burn survivor and founder of Bowers Ministry Her husband David was severely burned in an oxygen flash fire in 1999 and was not expected to survive his injuries Together they have recently co-authored a book titled Walk Through Fire One Couplersquos Journey of Finding Joy in the Midst of Tragedy David and Carly are long-time volunteers with the Phoenix Society for Burn Survivors and love to travel and share their story with groups For more of their story visit their website at wwwbowersministrycom

The Bowers family Carly David Samantha and Nathan

bull While branching outmdashYou will meet the most amazing strong and inspirational people through burn survivor organizations You will find a healthy love again with somebody who truly loves you for who you are

bull TodaymdashContinue on being strong It is okay to have ups and downs PTSD does get better Try not to stress so much because you fought too hard to live Donrsquot push yourself too hard Speak up for yourself and donrsquot let others put you down Keep your eyes open for new opportunities Keep negative people at a safe distance And do more of what makes you happy

Summarizing Meganrsquos struggles and her ongoing healing only begins to tell the story Because Megan continues to choose to move forward each day her story is still unfolding Megan describes herself as being very driven before the injury and though she is still searching for her ideal career direction her attitude and her perseverance shine through ldquoThose capable of the greatest lightrdquo she believes ldquoare often those taken through the greatest darknessrdquo

Ultimately it is truly the combination of the support she has found and her own incredible resilience that have made Megan a true survivor

Individuals burned at the hands of another share the challenges that all burn survivors face along with some very unique ones Probably the most challenging difference can be the shame and guilt that a survivor often feelsmdashthe erroneous thoughts that the burn injury might have been his or her fault These self-blaming thoughts can occur whether the abuser was someone the survivor knew or a stranger Perpetrators of abuse often make statements justifying their abusive action such as ldquoIf you hadnrsquot done that I wouldnrsquot have to do thisrdquo or ldquoItrsquos all your faultrdquo or other statements that blame the victim These thoughts can lead a survivor to isolate themselves from the very friends and family that they need to help them heal A connection with caring others is probably the most powerful element leading to recovery from any burn injury but it is especially helpful when the burn injury was delivered through the context of a relationship

In addition the abuse almost always leads to a sense of loss of safety in the world for the survivor which can also lead he or she to isolate avoid going out in public avoid family friends groups etc Again isolation only makes the situation worse

The physical injury resulting from burns that are inflicted by abuse (for example chemical burns) also can be very extensive requiring long periods of time for treatment

and physical healing multiple surgeries etc Usually this delays or interferes with the emotional healing process making emotional symptoms worse and social interactions more challenging

Healing Emotionally Is a ProcessAccording to Judith Herman a psychiatrist specializing in traumatic stress healing from the emotional effects of burns delivered by abuse is a 3-phase process bull Establishment of safety involves increasing self-

care especially by reaching out to safe others who can provide connection and reminders that the abuse was not the fault of the targeted individual This early phase also involves developing the emotional skills for handling painful feelings including the shame feelings that usually accompany burns inflicted by abuse A guide or counselor or support group can be invaluable at this time

bull Once the elements of this first phase of becoming more stable are in place the second phase remembrance and mourning can help those survivors who find that the memories and feelings are still overwhelming their lives Several evidence-based well-researched methods for processing painful traumatic memories can be very helpful including EMDR (Eye Movement Desensitization and Reprocessing) CBT (Cognitive-

Understanding Its Impact and How to HelpBy Samantha Price LPC NCC

Behavioral Therapy) and Somatic Experiencing Recently trauma therapy researchers have discovered that body-based therapies and activities including yoga tai chi singing dancing drumming most musical activities walking running swinging and skateboarding can also be used to help heal the effects of traumatic memories These patterned rhythmic activities help survivors regain control over their body and assist the brain to re-process painful memories (See Resource list)

bull The final phase social reconnection involves reconnecting with people and life This can include reaching out to a broader network of people who can help such as support groups Phoenix Society online

Peer Support Chats and Phoenix World Burn Congress (where there is a specific support group for this issue)

How Friends and Family Can HelpFriends and family can help by reaching out to the survivormdashoffering reassurance that they are available to listen to any details that he or she might be ready to share It is also helpful to remind the survivor that he or she is not to blame for the abusive act Helping the survivor realize as well as encouraging this resiliency belief can go a long way toward re-establishing a feeling of being safe in the world again and that can be a turning point in his or her emotional healing However friends and family must be patient and encourage the survivor to be patient as wellmdashhealing from a burn inflicted through abuse can be a long process

Resources BooksHerman JL Trauma and Recovery The Aftermath of Violence - From Domestic Abuse to Political Terror New York NY Basic Books 2015

van der Kolk B The Body Keeps the Score Mind Brain and Body in the Healing of Trauma New York NY Penguin Books 2014

WebsitesEMDR information and therapist directory EMDR International Association website Available at wwwemdriaorg

Cognitive-behavioral therapy information and CBT therapist directory National Association of Cognitive-Behavioral Therapists website Available at wwwnacbtorg

Somatic Experiencing approach to trauma processing information and practitioner directory Somatic Experiencing Trauma Institute website Available at wwwtraumahealingorg

Megan found support at Phoenix WBC

Care for Caregivers continued from page 8

Megan with Tom Edge at Phoenix World Burn Congress

Her scars are like question marks branded on her bodymdasheach one punctuating a longing for answers she may never find Alexi Pyles was born in China 22 years ago At the age of 6 months she was found by strangers her tiny torso freshly blistered

The details of her injury remain a mystery She knows only that she was scalded abandoned discovered and surrendered to an orphanagemdashall on the same day Adopted by her American mother at age 2 she came to the United States and began a new life

Growing up has been a lonely journey for Alexi She attended burn camps and activities hosted by local burn organizations experiences which she treasured however feelings of isolation still clung to her Struggling to reconcile her scars and the hurts of her past Alexi never quite felt like she belonged

ldquoPeople were so judgmental of my scars For most of my college years I lived alone and didnrsquot want to speak to anyone because sometimes being alone made me most comfortablerdquo she recalls

Despite her struggles Alexi has never stopped searching for connection Through the years her role with her local burn community shifted from camper and participant to volunteer She found joy in giving back and as her college years came to an end she wanted to do more

Alexi Pyles Finds Joy in Giving BackA Quest for Connection

Make Your Membership Gift Todaybull By Mail Use the convenient envelope provided in this issue

bull Online Go to wwwphoenix-societyorgmembership2017

bull By Phone Call Dayna Neff at 800-888-2876

ldquoBeing at the Congress has opened my eyes to know that I can keep moving forward Itrsquos like I am finally free on the insiderdquo

Her heart was drawn toward the Phoenix Society As a 3-year recipient of the Phoenix Education Grant scholarship she decided to show her gratitude by serving as a peer mentor at the 2016 Phoenix World Burn Congress It was her first Congress and she went with a mission to help others

What she didnrsquot expect was how others would help hermdashand how deeply affected her life would be

ldquoI have felt alone every day Wherever I would go I wouldnrsquot fit inrdquo says Alexirdquo but at the World Burn Congress it was different I felt so comfortable There are no words to explain itrdquo

who are also healingmdashbeing able to have their shoulder and give them minemdashthat partnership is playing into my healingrdquo

Life is full of ups and downs but Alexi no longer feels alone in her joys or struggles In the Phoenix Society she sees a family of survivors in which mutual support brings hope and healing a community where the power of ldquowerdquo breaks the bonds of isolation a safe place where she belongs And in Alexi we see the transformational healing that comes when survivors find connection and know they truly are never alone

People like Alexi need the Phoenix Society most

and people like you

make it possible for us to reach them every day

We know there are thousands of other survivors each year who struggle when they are unable to access long-term support We also know that once they find the Phoenix community they experience an amazing connection and the support needed to heal

It is clear that when we work together we can transform lives

With your membership gift you can help us continue to educate advocate and raise our voices so that all burn survivors have the hope and support needed to thrive again

Letrsquos keep growing our impact Letrsquos reach those who need us most Letrsquos let survivors know they are never alone We canrsquot do it without you Give today

She found connection a sense of belonging that for a lifetime had eluded her And it left her astonished and changed It was a new beginning for Alexi

ldquoI still have a lot of healing to do But this is where I am supposed to berdquo she explains ldquoBeing around others

The Impact of PTSDon Survivors and

Their FamiliesBy Jeannie Singleton MSW LSW

ka honua (world) all affect each other In Hawaii where I live and work we often talk about the importance of living our lives according to the lōkahi wheel2 The word lōkahi means balance and harmony and the lōkahi wheel consists of the following six ldquospokesrdquo

bull FriendsFamily

bull WorkSchool

bull ThinkingMind

bull FeelingsEmotions

bull PhysicalBody

bull SpiritualSoul

If any area or spoke of your wheel is damaged or ldquoflattenedrdquo then it will not rotate smoothly and every area of your life will be affected This is especially true for individuals experiencing PTSD The physical experiences of PTSD such as being anxious aggressive jumpy irritable or angry can all lead to sleep disturbances which in turn can cause one to feel overwhelmed by the needs of family which then leads to feeling detacheddisconnected from others which then leads to isolation which in turn can lead to depression and thoughts of worthlessness So as you can see these spokes or areas are interrelated and an imbalance affects not only the well-being of the individual suffering from PTSD but also those immediately involved with that person Parents children spouses friends and co-workers can be affected directly or indirectly by the actions or inaction of a person suffering from PTSD Family and friends may feel hurt discouraged or angry because their loved one has been unable to overcome the effects of the initial trauma or the ongoing trauma of the PTSD symptoms

Being Mindful When Supporting a Loved One Mindfulness is probably one of the easiest and most difficult practices that can be used by friends and family members to help support their loved ones who are struggling with PTSD The easy part about being mindful is that it does not take any specialized training or skills to do The difficult part about being mindful is that by nature most of us are reactive and do not take the time to look past what we are hearing to see what might be driving the actions of the individual suffering from PTSD

For example individuals suffering from PTSD often express feelings of being ldquoreally angryrdquo or ldquogoing from 0 to 10 in the blink of an eyerdquo without realizing that the lack of sleep that they are probably experiencing has moved their anger thermometer from a baseline setting of 0 to a setting of 5 which means that they are really going from 5 to 10 in the blink of an eye So are they really angry or are they just not at their baseline for tolerance

Perhaps you want to go to the movies and you ask your spousefriendloved one who is suffering from PTSD to go with you His or her response may be a forceful ldquoNordquo Instead of just accepting the negative response

you should look deeper into what you are asking this individual to do Are you asking that person to go to the theater on an opening night or on a Friday at prime time when there are likely to be crowds I counseled a couple who were experiencing just this issue The wife would take her husbandrsquos ldquonordquo as a personal rejection her husband was sure she did not care about his feelings otherwise he believed she wouldnrsquot have asked him to subject himself to the opening night of a movie at 7 pm During our session both of them were surprised to hear what the other person was thinking and were a little sheepish when they realized that both of their needs could have been met by simply being a little more ldquomindfulrdquo about what they were asking of each other In a case like this a simple adjustment in the plan such as going to the movie during the week or attending a matineacutee may have been a much more comfortable and acceptable alternative

Laying the Foundation for Successful RecoveryAccording to the National Center for PTSD the amount of help and support that one receives after experiencing a traumatic event has a direct correlation to the likelihood of developing PTSD3 If the trauma survivor is unable to receive mental health treatment in a timely manner after the injury as is the case in most significant burn injuries family members or friends should seek help and educate themselves on what to look for and ways to support the individual during the recovery process If left untreated PTSD can become just as devastating to the trauma survivor as the initial trauma By being informed by being educated by being mindful and by being available you can lay the foundation for your loved one to have a successful path to recoverymdashboth mentally and physically

References

1 American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders 5th ed Washington DC American Psychiatric Association 2013

2 Ocean Land Sky Group Lōkahi Sustainable Village Hawaii Vision 2009-2013 1 Available at wwwoceanlandskycomwp-contentuploads201203LOKAHI-SVH-Vision111pdf

3 US Department of Veteran Affairs National Center for PTSD website Available at wwwptsdvagov

Jeannie Singleton is a licensed medical social worker currently working in the burn center and ICU unit at Straub Medical Center Her prior experience includes working in child welfare services adult mental health and substance abuse and the Veterans Administration Jeannie received her certification in cognitive processing therapy for PTSD while working with veterans in the traumatic stress recovery program

In Issue 2 2016 of Burn Support Magazine we discussed the signs symptoms and criteria used to diagnose post-traumatic stress disorder (PTSD) according to DSM-V the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition1 The goal was to provide a better understanding of PTSD and lend some normalcy to what individuals who are struggling with the aftermath of trauma are experiencing In the following issue we explored treatment options for individuals who are struggling with PTSD or experiencing symptoms of PTSD including cognitive processing therapy eye movement desensitization and reprocessing therapy prolonged exposure therapy and stress inoculation training So now that we know what PTSD looks like what the causes

of it are and what therapies are available to treat it we can put it all together and discuss the impact that PTSD has on survivors and their families

As previously discussed in order to meet DSM-V criteria for PTSD an individual must be experiencing symptoms that lead to distress andor impairment in life including but not limited to job family and social functioning In other words not only is the trauma survivor affected but so is his or her immediate circle of family friends and co-workers

Understanding the Importance of BalanceTraditional Hawaiian culture includes the belief that the ke kino (body) ka manalsquoo (mind) ka uhane (spirit) and

Pain Treatment Prevention in Burn SurvivorsBy Stefan J Friedrichsdorf MD FAAP

Pain is one of the most distressing symptoms experienced after a burn injury In fact we know that children and teenagers who suffer from unrelieved pain are much more likely to suffer from anxiety depression and chronic pain as adults We also know that inadequate pain management in the hospital immediately after a burn trauma results in a much higher risk of post-traumatic stress disorder (PTSD) On the other hand excellent pain management not surprisingly results in fast healing

Several state-of-the-art pain methods are available to help treat and sometimes prevent the pain of a burn injury and when they are used at the same time (an approach known as multimodal analgesia) they can often minimize or prevent pain

Types of Pain and Their ManagementFollowing are descriptions of the most common types of pain that burn patients experience Being familiar with the various types of pain and pain management methods will make it easier for you to discuss this issue with your doctor Keep in mind that by addressing the different types of pain at the same time it is more likely that excellent pain control can be achieved

Acute PainAcute pain is caused by the actual skin and tissue injury of the burn trauma and the repetitive trauma such as debridement or inflammation during the initial hospitalization The key to preventing long-lasting pain is to initiate multimodal analgesia1 on day one of the burn injury (Studies have shown that if pain is not well controlled immediately after a burn trauma the chance of PTSD in infants children and adults is increased)

Acute-pain management usually requires around-the-clock pain medications Utilizing a combination of the following

seven treatments at the same time may be the most effective strategy and result in the fewest side effects bull Basic analgesiamdashacetaminophen plus a nonsteroidal

anti-inflammatory drug (NSAID) such as ibuprofen or ketorolac If side effects such as bleeding or stomach discomfort occur a COX-2 inhibitor could be another option

bull Opioids (which should not be called ldquonarcoticsrdquo)mdashmedications such as tramadol morphine fentanyl hydromorphone oxycodone or methadone carefully titrated to effect However if ldquoCokerdquo doesnrsquot work switch to ldquoPepsirdquo In other words a significant number of children or adults may experience side effects (which might be mitigated by a low-dose naloxone infusion) or poor analgesia on one opioid and then need to be rotated or switched to another strong opioid for better control After discharge home patients are weaned slowly off the opioids completely and in the absence of new tissue trauma are seldom expected to be on opioids for a longer than 1ndash2 months at home

bull Adjuvant analgesiamdashSee ldquoNeuropathic Painrdquo below bull Interventional modalities (or neuroaxial analgesia)mdash

nerve blocks and paravertebral or epidural pain pumps

The following three modalities are discussed in more detail under ldquoChronic or Persistent Painrdquo bull Rehabilitationmdashphysical therapy occupational

therapy speech therapy bull Psychological therapies and stress reduction bull Active integrative (nonpharmacological) therapiesmdash

treatmentsremedies that do not involve the use of medications

Procedural PainProcedural pain is caused by dressing changes intravenous (IV) access blood draws injections (shots) etc Patients report that in addition to dressing changes the repetitive needle pokes are the worst kind of pain they experience during their hospitalization Although this kind of pain can be completely prevented or significantly reduced by simple strategies some hospitals may not be offering these strategies to all their patients yet

At our institution we have implemented a Childrenrsquos Comfort Promise We promise to do everything to prevent and treat pain2 Many of our painful procedures are performed under mild moderate or deep sedation as needed In addition for needle-pokes (blood draws

injections vaccinations IV starts etc) we always offer the four ldquonon-negotiablesrdquo bull LidocainemdashA topical cream available over the

counter that can help numb the skin bull Sucrose (sugar water) or breastfeedingmdashAppropriate

for infants 0-12 months bull Comfort positioningmdashCan include swaddling warmth

skin-to-skin contact or facilitated tucking for infants Children 6 months and up can be given a choice of position including sitting upright on their parentrsquos lap Note Restraining children for procedures is never supportive and one study reported that children felt ashamed humiliated powerless and the loss of the right to control their own body

bull Age-appropriate distractionsmdashSpinning light devices blowing bubbles or pinwheels looking at books or ldquofind itrdquo pictures and using smartphones or other electronic devices with screens to play games or videos Parents can ask if a child life specialist is available to assist with this activity

Neuropathic PainNeuropathic pain according to the International Association for the Study of Pain is pain that arises as a direct consequence of a lesion or disease affecting the ldquosomatosensoryrdquo or nervous system A large number of children and adults develop neuropathic pain as a result of nerve damage caused by burn trauma and the treatment In addition to NSAIDs and opioids (for the initial post-traumatic hospitalization only) several ldquoadjuvantrdquo pain medications (with complicated names such as gabapentinoids low-dose tricyclic antidepressants alpha-agonists and NMDA-channel blockers) are commonly prescribed by pain experts to mitigate pain Although several medications may assist with controlling neuropathic pain physical and psychological therapies (and for some patients nerve blocks) are usually required components of excellent pain control and should not be omitted

Psycho-Spiritual-Emotional PainThe psychological and emotional impact of a burn injury results in ldquorealrdquo existing measurable pain3 however this pain can never be treated by opioids (or other pain medications) but rather through family and social support as well as the support of an interdisciplinary

care team whose members can include a social worker chaplain andor psychologist

Chronic or Persistent PainPain can persist after healing with more than one third to one half of the patients who have sustained severe burns reporting ongoing burn-related pain many years later They commonly experience pain at the injury site but may also have so-called ldquoprimary pain disordersrdquo such as headaches abdominal pain andor widespread pain in muscles joints and bones including fibromyalgia4

Effective treatment usually does not rely on medications but rather on a strategy that utilizes four treatment modalities at the same time bull Physical therapyexercisemdashMany patients with chronic

pain are deconditioned and sometimes exercise even causes worsening of pain A thoughtful daily (at home) training program then is required to improve movement and normalize function as much as possible

bull Active integrative therapiesmdashThe daily practice of deep breathing biofeedback (a technique using a video-game that trains people to improve their pain by controlling relaxing bodily processes that normally happen involuntarily such as heart rate blood pressure muscle tension and skin temperature) self-hypnosis mindfulness progressive muscle relaxation andor yoga can reduce pain by stimulating ldquoendorphinsrdquo (the bodyrsquos own pain medication that makes us to feel good) in the pain center of the brain

bull Psychological therapiesmdashPain can cause stress and stress usually worsens pain worsened pain then worsens mood which may affect anxiety and depression Effective strategies include cognitive-behavioral therapy (CBT) or play therapy for children and stress-reduction offered by a licensed therapist

bull Normalizing lifemdashThe key to effective pain control appears to be to normalize function first and then the pain gets better (unfortunately not the other way around) including returning to school or work normalizing sleep normalizing exercise and social life

A common mistake is for a patient to spend a lot of time and energy on just one or two of these modalities and when they appear to be ineffective become frustrated

saying ldquoI have done it all and nothing workedrdquo Itrsquos important for the patient to realize they must participate in all components of the strategy at the same time for a period of at least a few months for optimal results and to recognize that sometimes pain gets worse before it gets better

While opioids are usually not indicated for chronic persistent pain (unless there is repetitive new tissue injury) some adjuvant analgesia especially for nerve pain appear well tolerated and might be effective However for a large number of patients with chronic and persistent pain medications are not effective unless they are accompanied by the four-part strategy described above

In conclusion the effective prevention and treatment of pain in both children and adults after burn injuries require intensive multimodal pain control starting within the first hour after the trauma Equally important to medications are physical therapy and regular exercise integrative therapies psychological treatments and normalizing life

Unfortunately in 2017 pain management is still not taught sufficiently to nurses and physicians in most medical training programs and a large number of hospital leaderships have neglected to invest in state-of-the art pain programs Insurance companies are often unwilling to pay for evidence-based excellent pain control (namely physical and psychological therapies) This means that if you or a loved one is suffering from burn pain you should ask for professional help from interdisciplinary pain experts and take an active role in your own care Speak up if something is not working keep open communication with your care team and involve self-help groups If you find inadequate help in your region or your hospital contact the media and your elected representatives to lobby for full reimbursement by health insurances for interdisciplinary pain services

including those offered by physical therapists and psychologists

References1 Friedrichsdorf SJ Prevention and treatment of pain in hospitalized

infants children and teenagers from myths and morphine to multimodal analgesia In Sommer CL Wallace MS Cohen SP Kress M Pain 2016 Refresher Courses 16th World Congress on Pain Washington DC International Association for the Study of Pain IASP Press 2016309-319

2 Childrenrsquos Comfort Promise Childrenrsquos Minnesota website Available at wwwchildrensMNorgComfortPromise

3 Bronson M Psychological and emotional impact of a burn injury Available at httpswwwphoenix-societyorgresourcesentrypsychological-and-emotional-impact

4 Friedrichsdorf SJ et al Chronic pain in children and adolescents diagnosis and treatment of primary pain disorders in head abdomen muscles and joints Children (Basel) 20163E42 Available at httpswwwncbinlmnihgovpmcarticlesPMC5184817

Additional ResourcesPUBLICATIONSPediatric Chronic Pain Programs by StateProvince American Pain Society 2015 Available at httpamericanpainsocietyorguploadsget-involvedPainClinicList_12_2015pdf

Managing Pain After Burn Injury by Shelley A Wiechman PhD and Shawn T Mason PhD in collaboration with the University of Washington Model Systems Knowledge Translation Center 2011 Available at httpswwwphoenix-societyorgresourcesentrymanaging-pain

VIDEOSMeet the Interdisciplinary Chronic Pain Clinic Team at Childrenrsquos Minnesota [video online] LittleStars TV 2015 Available at httpswwwyoutubecomwatcht=13ampv=Bb1fHxfjdWI

Healing Environment Pain Clinic Kiran Stordalen and Horst Rechelbacher Pediatric Pain Palliative and Integrative Medicine Clinic [video online] Childrenrsquos Minnesota Available at httpsvimeocom122654881

Dr Stefan Friedrichsdorf is medical director of the Department of Pain Medicine Palliative Care and Integrative Medicine at Childrenrsquos Hospitals and Clinics in Minnesota Minneapolis St Paulmdashone of the largest and most comprehensive programs of its kind in the country

Many of us in the burn community celebrate our ldquoburniversaryrdquo We use it as an opportunity to reflect on how far we have come and to set new goals Similarly in conjunction with the Phoenix Societyrsquos 40th anniversary this year our staff has been working with many of you to reflect on how far we as an organization have come and to plan for our next significant phase of growth The effort has been substantial We are now more passionate and driven then ever to take our work to a new level of service and impact So I want to share with all of you how we collaboratively developed our vision for the future and how with your help we can achieve it

An Inclusive Process Over the last 2 years the Phoenix Society has reached out to survivors their loved ones volunteers healthcare providers fire service professionals academics and researchers These diverse members of our community participated in surveys program reviews interviews and focus groups to provide feedback on how the Phoenix Society can improve and have an even greater impact This input is helping us to identify innovative ways to support and expand the offerings of the Phoenix Society

We learned that it is important to many of you that we find ways to scale our programs to reach a wider audience Many survivors are still facing significant gaps in access to long-term resources As the rate of survival from burn injuries continues to improve the need for our programs and resources has increased It is clear that thousands of burn survivors are still struggling through recovery alonemdasheither because they arenrsquot aware of the Phoenix Society network arenrsquot located near a facility at which they can receive support from a Phoenix SOARreg (Survivors Offering Assistance in Recoveryreg) volunteer or canrsquot physically attend Phoenix World Burn Congressreg In the worst-case scenario the Phoenix Society does not offer the type of programming they need Itrsquos not enough to settle for reaching only a segment of the people who need this community when it is possible for everyone affected by a burn injury to have access to transformational healing Research now substantiates what we have witnessed over the last 40 yearsmdashthat survivors and their families fare better when they have the support they need as they recover from a burn injury1-3

You have challenged us to envision a future in which innovative approaches can be implemented to reach

those who are still alone Making that vision a reality will ensure that anyone suffering from a burn injury can access the Phoenix Society network services and support anywhere in the world whenever they need it

We see what can be but we also know that achieving our goal is dependent on your willingness to share your experience talent and connections so that we have the necessary human and financial resources to implement our plan

The Development of New Mission and Vision StatementsWe also recognized that our previous mission statement ldquoEmpowering anyone affected by a burn injury through peer support education and advocacyrdquo described the what of the Phoenix Society but not the why So based on the input we received from a diverse group of burn community constituents we have reformulated our mission and vision statements to reflect the Phoenix Societyrsquos ultimate mission and future vision as followsMission Statement Phoenix Society for Burn Survivors|Building a Community for Transformational Healing Vision Statement Uniting the voice of the burn community across the globe to profoundly advance lifelong healing optimal recovery and burn prevention

Working collectively with survivors families healthcare professionals fire service professionals and donors the Phoenix Society seeks to unite the voice of the burn community around the globe to profoundly advance lifelong healing optimal recovery and burn prevention

We see what can be

A Strategy to Reach More People Create Greater ImpactTo meet the growing demand we know the Phoenix Society must find new and innovative ways to scale and deliver its programs both physically and virtually to a wider audience The latter will require a significant investment in advanced technology to extend the reach of the Phoenix Societyrsquos programs and resources around the globe

What specifically does our vision for the future entail How will the Phoenix Society of the future look connect and operate How will success be measured

Developing a New Vision

We See What Can BeBy Amy Acton RN BSNExecutive Director

John OrsquoLeary Named to Phoenix Society BoardAuthor and inspirational speaker John OrsquoLeary was recently named to the Phoenix Societyrsquos board of directors In 1987 John was a curious 9-year-old boy Playing with fire and gasoline he created a massive explosion in his home and was burned on 100 of his body He was given a 1-percent chance to live His epic story of survival was first showcased in his parentsrsquo book Overwhelming Odds in 2006 It was this book that first invited John to embrace his miraculous recovery and share it with the world John has written the national best-selling book On Fire The 7 Choices to Ignite a Radically Inspired Life published in 2016 and teaches more than 50000 people around the world each year how to live inspired

Following are 7 strategic initiatives that will enable us to scale programs reach more people and create greater impact 1 Use the Phoenix Societyrsquos collective united voice

to support advocacy efforts that can effect change Our voices will be made more powerful by attracting connecting and uniting with the many constituencies that make up our community Uniting the voices of the burn community with other like-minded organizations will strengthen our advocacy for burn prevention improved quality care additional research and advancements that enhance survivorsrsquo quality of life

2 Attract world-class experts such as health care professionals and research partners who can help us develop new programs (using the latest research and knowledge) improve burn care and connect the right voices to the Phoenix Societyrsquos mission

3 Forge collaborative partnerships with organizations to work synergistically to tackle key issues achieve the

Phoenix Society communityrsquos vision and expand our reach Just as a burn survivor canrsquot make the journey alone neither can the Phoenix Society There is strength in forming partnerships with other stakeholders working together toward a common cause and with a unified voice There is strength in unity

4 Expand programming to meet the growing changing needs of the community through new content development and innovative forms of program delivery The Phoenix Society can develop programming that is informed by world-class experts by survivors themselves and by knowledge gained from research and data Doing so will enable the Phoenix Society to serve unique groups within the burn community through the use of more focused programs and resources designed specifically for those we serve

5 Embrace technology to increase access to critical resources expanding the Phoenix Societyrsquos reach and

The journey of the Phoenix Society is not unlike that of a burn survivormdashwe cannot make our journey alone Together however not only can we see what can be but we can translate that exciting vision into reality

To support our vision the Phoenix Society recently kicked off our Never Alone capacity campaign We have set an ambitious goal of raising $6 million by the end of 2017 specifically to support those strategic initiatives that will enable us to make our vision a reality We are grateful that during the initial phase of the campaign we have raised $4 million of that $6 million goal thanks to generous donors who above and beyond their annual financial support have stepped up to lead the way

Phoenix Societyrsquos Never Alone Campaign Supports Our Vision

Contact InformationThe Phoenix Society Inc1835 R W Berends Dr SW Grand Rapids MI 49519-4955Phone 8008882876Fax 6164582831Web Site wwwphoenix-societyorgE-Mail infophoenix-societyorg

Amy Acton Executive DirectorSara Bruinsma Administrative AssistantAmy Clark Strategic Initiatives DirectorMegan Geerling Development SpecialistKerri Hanson Office ManagerJessica Irven Adult amp Support Services Program

ManagerAndrea Marz Executive AssistantDayna Neff Development Director Nicole Perry Youth amp Family Services Program

ManagerPam Peterson Program DirectorStephanie Petrella Administrative Assistant Tammy VanMeter Database Coordinator

Trish Acton Phoenix Burn Support Magazine Layout amp Design

Maureen Kalil Phoenix Burn Support Magazine Editor

Note The Phoenix Society does not endorse products or services but is committed to providing information as it relates to the burn community

Lorraine Carli PresidentVice President of Outreach and AdvocacyNational Fire Protection AssociationQuincy MA

Karen Colligan Vice PresidentBurn Survivor Founder amp Principal PeopleThinkSan Francisco CA

Anthony F Burke TreasurerProgram ManagerSenscio Systems IncSioux Falls SD

Peg Paul SecretaryPresident Peg Paul amp AssociatesFrankfort IL

Board of Directors

Karen Badger PhD MSWAssistant Provost and Associate Dean in

Undergraduate EducationAssociate Professor of Social WorkUniversity of KentuckyLexington KY

Dean Elliott JD Chief Operating OfficerAlloSourceCentennial CO

Jeff GallinatBurn Survivor Senior Vice PresidentManufacturing OperationsCisco SystemsLos Gatos CA

Victor C Joe MD FACS FCCPAssociate Clinical Professor of SurgeryDirector UC Irvine Regional Burn CenterUniversity of California Irvine Medical CenterOrange CA

John OrsquoLearyBurn SurvivorAuthor and Inspirational SpeakerSt Louis MO

Amar Patel DHSc MS NREMT-PDirector Center for Innovative Learning WakeMed Health amp Hospitals Adjunct Instructor UNC School of Medicine Raleigh NC

Sheryl Ramstad RN PHN MN JDBurn SurvivorPeer Support RepresentativeRegions Hospital Burn CenterSt Paul MN

Jill Sproul RN MSBurn SurvivorNurse ManagerRegional Burn Center at Santa Clara Valley Medical Center San Jose CA

Mike WilliamsBurn Survivor Investigator Harnett County Sheriffrsquos OfficeVol Firefighter Northwest Harnett Fire DeptFuquay Varina NC

Directors

Officers

enabling more people to access content and support services The Phoenix Society can serve more people in more places (especially remote locations) and scale programs efficiently with a greater use of technology

6 Raise awareness so that every burn survivor knows that help is available Too many survivors have ldquostumbledrdquo upon the Phoenix Society after suffering for years To broaden our reach we plan to initiate more targeted marketing and communications programs so that survivors loved ones burn care professionals volunteers and others are aware of the Society can access our support services and programs and can share their inspirational stories of hope and healing To carry our message forward we will need youmdashour volunteers our community members and our partners

7 Building an organizational human and operations infrastructure to ensure transformational healing now and into the future The Phoenix Society is revising its business model to expand and sustain its vision partners resources and awareness of valued programs and the services it provides

To read more about out new strategic vision visit wwwphoenix-societyorgstrategic-vision

A Commitment to Our Core ValuesIt will take all of us working together to synthesize the wealth of knowledge and information available in our community We will convene world-class experts to help us address the key issues that are important to us We will empower our community members to be self-advocates and work with us for change We will continue to build high-impact programs and services that build a community for transformational healing

Finally as we work to achieve our strategic vision we will continue to adhere to the Phoenix Societyrsquos core values of integrity innovation collaboration and respect and focused effort and investment in the key strategic areas while continuing to provide the high-quality programs that have benefited so many of us

References1 Badger K Royse D Adult burn survivorsrsquo views of peer support a

qualitative study Social Work in Health Care 201049299-313

2 Badger K Royse D Helping others heal burn survivors and peer support Social Work in Health Care 2010491-18

3 Sproul JL Malloy S Abriam-Yago K Perceived sources of support of adult burn survivors J Burn Care Res 200930975-982

National Fire Protection Association

Tony Gonzalez in Memory of Ernest amp Marjorie Gonzalez

Tellepsen Family

Mitch and Aimee Dryer

Spiegel Burn Foundation

Keith Mardak

The Everett Family

Horan Family Charitable Fund

Anonymous

Fifth Commandment Fund Dr G Mark and Sandra Cramolini

Sarah and Joseph Bazey in Memory of Leonard and Betty Wojtowicz

Dr and Mrs Victor and Jamie Joe Daryl and Sandy Phillips

Anonymous Don amp Carol Cheley

in Honor of Marion Doctor Campers of Cheley Colorado Camps

Jill Sproul and Kevin Cook Karen Badger Lorraine Carli

Dr and Mrs Amar Patel Peg Paul

Anthony F Burke and Stacey Loen-Burke Mike Williams Anonymous

We are are grateful to these initial donors of the Never Alone Capacity Campaignmdashpartners whose generosity honors our history and supports our vision of tomorrow

Diamond Phoenix Boston Firefighters Burn

Foundation

Platinum PhoenixTyco Cares Foundation

Golden PhoenixBuses By The Beach IncCommon Voices Patrick C Horan and Valerie

Mosher Illinois Burn Prevention

AssociationRusty and Susan LugliNational Fire Protection

Association National Fire Sprinkler

Association Empire Chapter

National Fire Sprinkler Association Connecticut Chapter

Raysrsquod Up Family Foundation

Schwab Charitable FundSmith amp Nephew IncStoris Inc Donald and Denise SurdovalTellepsen Family

Silver PhoenixThe Everett FamilyKeith Mardak and Mary

VandenbergSamuel J Moore-SobelNational Fire Sprinkler

Association New Jersey Chapter

George and Joanne PessottiPortland Firefighters

Childrenrsquos Burn FoundationProvidence Firefighters

Burn FoundationKaren and Reg RichardROXULViking Group IncAlan D Wiginton

Bronze PhoenixAlways Wired Bead LadyMichele M Anderson and

Frank NickersonNilda L ClaudioCoastway Cares Charitable

FoundationCoastway Community BankCommunity Tissue ServicesDedham Institution for

SavingsDo Right FoundationEdward and Gloria FreelandJeff GallinatNancy and Peter GeorgioDr David G Greenhalgh

and Kathy B GreenhalghRichard and Mary HalpertKalamazoo Community

FoundationLewis E Kazis ScDMark and Deana LecyAndrew P LeeIan D MacDiarmid

Donald and Joella MillerNetwork for GoodDaryl and Sandy PhillipsChief Ronald J SiarnickiSprinkler Fitters Local Union

550John and Carol TrittschuhUnited Way of Rhode IslandUniversity Surgical AssociatesJames A VidasThomas Wuori

SupporterAmy Acton RN BSNJanet and Forrest AurentzMatt and Mary Ellen

BrennanSusan ColliganDenise and George DohertyThomas DoyleLesley DraperFidelity Charitable Gift FundGeorgia Firefighters Burn

FoundationGive With LibertyJeffrey GraySuzanne L HaarMary K HenselerCynthia and Jeffrey HunkerDianne Jones MA LMHCGary and Candice KeithDr Robert and Karen KleinJackie Kleinman and James

BrightmanRhonda J KurtzMylene LarsenBrian M LutzMark and Pamela MaierDeborah MinierDebra Minton and Theresa

A OsborneDayna NeffNew Haven County SVC

Managers AssociationCatherine A NogaThomas PessottiLee and Judy PosmaStephen PrziborowskiBarbara and Kenneth

QuayleSue A Ramaglia RN BSNRobert ReedBarry SamuelsSteven and Cheryl

SchneiderSimplexGrinnellDr Lynn and Pat SolemSprinkler Fitters Local Union

417Victor and Lori Ann StagnaroThe Fedd Agency IncTMMC IncSteven and Giena VogelRosemary J VossSoren WolmarSamuel L Wright and

Elizabeth D RieleyCharles Yowler MD

FriendGregory A AbbottAbbVie Inc Employee Giving

CampaignHarry AdamsScott and Dawn Adams

Linda AdlerKathryn and Carl AgerbeckAmazonSmile FoundationAmeriprise Financial IncJenny AndersonJoan and Scott AndersonScott AndersonMichael AnderssonDavid and Charlene BaileyMegan BaldonadoMeredith Balgley and Erik

BendixBarry D BallietCesar and Margaret BaroStan and Kaye BarrettKathleen BartonAmy BatemanMary BellairsBenevityDoug and Christina

BensingerJackie BishopRaymond B Bizal PEDavid G BlatchfordDonald P BlissKeith and Karen BockDab BombaciAndria Booth-KowalczykEmily BorellMark and Joan BoronGenine and John BorrelliJames A Bosch MAMary Jo and Ronald BoschDeborah L BosticDavid and Carly BowersMarilyn K BowersMaggie BrennanAlan and Delwyn BreslauTod BreslauJudy and Clarke BrinckerhoffChris and Cathy BrockettWanda Brodzka MDJanet BrunerEllen M BuckErin BuckleyAnna BucknerJan BurgerAshley M BurgettAnthony F Burke and

Stacey Loen-BurkeBarry and Patty BurkhartDanna and William ButlerErin ButlerKaitlin ButlerJay CannonJohn P CareyLorraine Carli and Jay

BluesteinRita CaroleManuel A CarrerasSonia CastleberryJohn D CaufieldCynthia D CedenoKam Yu ChanPamela ChanRobert and Judith ChastainAnnekathrin ChatterjeeLily ChatterjeeChesapeake Bay Area

Combined Federal Campaign

Lauren ChiarelloPauline M ChisholmHelen ChristiansEvelyn Chu

Clark Hunt Ahern amp EmbryCorrine and Peter ClaveyFred and Pat CloppertRichard CohenGene A CollierFay and Bruce ColliganStephan and Julie ConnellyThomas ConnellyKeith CooperDorothy CostaValerie CottrellJames CoulombeLinda CourticeChris and Nancy CoxJim CrawfordSonya CromwellDavid CwiekJames F DaltonJoey DrsquoAmicoRichard DavisPaul DaynesTracy DeCookMichelle DelacalleMelinda DelCioppioRebecca F DenlingerVirdella and Melvin

DenwiddieLori DevarsoElaine Devine LICSWKaryn DigiorgioKerri DikunAlan R Dimick MD FACSJaci DimitriouPeter DiSalvioChuck and Rosemary

DoughertySusanne DrewettMitch and Aimee DryerAlyssa Dulong RNEileen and Raymond DuvalRebecca and Matthew

DuvalSarah DuvalHilary DyeEastern Pennsylvania and

South Jersey CFCKathleen EganThomas W ElderDavid and Annette EmersonJason EmeryMike and Patti EmmertChristine and Dave

EngelhardtFrank and Carole EscamillaLarry and Susan FallonMary Fallon and Patricia

FallonAlfred B FantiniChief Ronald R FarrArthur FarrellLynn FarrellSher Marie FarrellTheresa FletcherLeslie FlowersFM Global FoundationKristen M Francoeur RN

MSNJennifer and Jonathan

FranzenBev and Bruce GartnerMegan GeerlingLucy GiamettaCheryl GilroyNatalie Goff RNThomas Gorecki

Kelly A GormanJosie GrandinettiOlin L GreeneDebbie GregoryJohn and Laurie GriecoLynda GriffinSharon GrodiJim and Eileen HaagCheryl A HanleyKerri HansonJanet Harman RNDale HarperRebecca and Michael HartMatilda M HaskellHeart of West Michigan

United WayJamie L Heffernan RNAlice HeidingerAdenin HenriquezDana Henry and Sarah

McDonaldLea N HetlandBrad and Jennifer HimesHiu Hung HoHoi HoWendy B HoernerJames M HoffmanMary and Edward HoldenKatherine HolmesGary J HonoldErin HopkinsKarolin HormozMeghan HousewrightDavid HowardSteven and Patricia HowellHowie Carr Show EnterprisesHeather HubbardJeffery and Maggie HudsonGregg R HuennekensCarole Adler HughesDoug HuskeyKelli ImhoffKristin ImhoffInternational Association of

Fire ChiefsShelbia JacksonLesley JamesMarjorie JamesSabrina JasminKathleen JensenChief Mark H John and

Gabrielle N MinorDavid and Margaret JohnsonDiane L JohnsonDouglas JohnsonKaren S JohnsonDebra and Tom JonesR Bruce and Janet JonesMark and Karen JoynerSteven E Joyner JrKevin and Linda JurusJames and Genevieve

KacmarBarbara KanegisJonathan and Carol KaralekasDonna M KaramCharles KelleherShannon and Derek KelleyMike Kelsey and Corrina

OrsquoBrien KelseyPatrick KiernanJohn H KingMatthew KirkevoldRobert and Francia KisselStephen and Carol Kissell

Donor RecognitionWe thank the following individuals and organizations for their recent contributions

This is an acknowledgement of donations received between September 1 2016 and December 31 2016

Burn Survivors Needed for a Study

if you are a burn survivor who bull is 18 years or older bull has a burn injury with TBSA greater or equal to 5 bull has access to the internet

You may be eligible to participate in two online surveys By participating you will help test a questionnaire designed to assess the social recovery of people with burn injuries

For their time and completion of two surveys participants will receive a $50 Visa gift card

For more information email librebuedu or call 18442559987

ct Burn Recovery Evaluation

BMC and BU Medical Campus IRBIRB NUMBER H-35657IRB APPROVAL DATE 01092017

LEGACY SOCIETYHonoring individuals who have made provisions for the Phoenix Society within their estate plans or life income plans Have you remembered the Phoenix Society Please let us know so we can include you in our Benefactors Society

Sarah Bazey BA OPMBruce BergerGary D Boller TrustDeborah L BosticAlan and Delwyn BreslauJohn P CapannaManuel CarrerasAntoinette M CoppolaSuzanne Jason Eric Lynne

amp Kari DeLorenzo

Emma FreelandAnthony S GonzalezIra GruberRichard and Mary HalpertJanet Harman RNJay HeyingPatrick C HoranBarbara KanegisAlan C KrittaAndrew Lee

Mike and Mary LutzChristie and David McKnightMichelle MercierGail MillerChris and Karen NolesJoanne PessottiKen and Barbara QuayleGregory and Janice RoachSandra RoseCynthia Sekowski PhD

TOM amp MARY HESSEL ENDOWMENT FUND

PHOENIX CHAMPIONS - MEMBERS OF THE PHOENIX SOCIETY MONTHLY GIVING CLUBAmy Acton RN BSNMegan BaldonadoMeredith Balgley and Erik

BendixDeborah L BosticTod Breslau

Anthony F Burke and Stacey Loen-Burke

Sonia CastleberryLinda CourticeSonya CromwellRebecca Denlinger

Megan GeerlingJanet Harman RNJamie Heffernan RNDebra and Tom JonesBarbara KanegisJeanne LaSargeBono

Dayna NeffPam PetersonKenneth and Joanne

PutnamSiena RiffiaDr Lynn and Pat Solem

John E SperleJune VaughnTony Warnick

Julie SpiegelHugh R StewartMaureen TamburroGladys Vose

William and Sandra WeinhardtDebra WoodliffWrightMartinez Family Trust

Michael J Klatskin and Judith Feldman

Dolores KneeceMichael and Lana KnightBrian and Kate KnoxKPMG Community Giving

CampaignKPrsquos of the 80rsquosMarianne and Jason KrassowCarrie KrehlikDenise and James KrummiDavid LaFondJoshua LagasseMark LaGasseAnne M LamorgeseDonna E LanganChris LangworthFrank LangworthPatrick LangworthAbella E LapitanRoberta LaPorteVictoria J LaRochelleJeanne LaSargeBonoMark LehmanChristopher LePineDr Jerry Leventhal and

Sharon LeventhalLinda LewisJoe and Diane LimaRick LiptonMeredith R LoughlinFabiana I LoweKelly J LuevanoMary and Mike LutzKelly LynchMr Connie R MacDonaldJames MacronPamela F MahoneyMichelle MaloneJoshua MaloneyRoberta Mann MDJames and Veronica MapleDino and Ida MarinoDenise MartinDonald and Tracy MartinMathews Brothers CompanyKara and Dave MatzSam and Patricia MauroJames and Sherri MaymonDonna M McCartney MSWBrian McDonald and Anna OzMcGraw-Hill Education

Helping Hands ProgramCory McPhersonMeagan McQuade

Gregory and Julie MedeirosLesvia G MendezLori MerchantJosef MeyerRobert C MeyerJonathan MilackKaz and Pat MiyagiLinda MnieceBelinda and John MontsJim and Sue MorrisAlan F MountDoris MucciJoseph MyersApipong NakayuenyongsukDaniel NeczyporElizabeth NelsonMichelle NiedermeierLeonard and Mary NugentNursing Consultation

Services LtdJoseph and Yolanda NyderekCarolyn OrsquoBrienKathleen OrsquoBrienMaureen OrsquoBrienCami PalomoMelanie M ParkerMichelle ParrottLiz PattersonPeg PaulJim and Lisa PauleyJay PerreaultPam Peterson RN BSNStephanie V PetrellaJudy L PhillipsAmy PietrafittaDaniel J PlexmanJenean Pomeroy RNAmy PorterRobin and Bill PorterJustina PowellLacey Maguire PowellSally PowellCherersquo PrestonBasil A Pruitt Jr MDKenneth and Joanne PutnamNancy M QuigleyGeorge RabielaBarbara and Jim RannazzisiDawn and Carl RenzettiJulie Reynolds and Tom KlemLucie ReynoldsLisa RichardsSiena RiffiaNaomi M RimpleKathleen Rivera

Max and Connie RoachMary RogersRonald and Jane RomardLisa RomesserSusan RosenbergMiranda RossAmy and Doug RupertJennifer RussitanoGina M Russo and Steven

ShermanCindy E Rutter RN BSNRandy SaferStephanie SandsSteven F SawyerKevin C ScarbroughMaaike SchenoneSteven SchroluckeJane SchuetteColleen and Michael ScottLinda ScottVivian M ScottDiego SegoviaYouvapheap SengDaniel H SheingoldIrene SherrJill ShinnefieldLeatrice and David ShippeeShowboat Automotive

Supply IncJonathan Siegel and Sarah

WilcoxMichael SinsigalliDr David SluyterGordon and Judith SmithMeLinda and Chris SmithStephen M SmithMichael and Amy SmockDale and Patricia SowersMichael J SpazianiJohn E SperleAshley SproatJill Sproul and Kevin CookSandra StabileKarl and Judith StadlerLoretta L StagnittoRobert StanglerLisa StatonRana Stephan RNMark and Kalay StevensCarol and Michael StewartStefan and Denise StrojwasTheodore and Laurel

TalbottJames and Aloma TaniguchiRebecca Tatreau

Eric TaylorThe Greek Islands RestaurantAbby ThomasBarbara ThomasChris and Terri ThompsonRonald ThompsonCheryl A Thompson-

JohnstoneDr Christopher and

Simonida ThurberJenn TomLarry and Donna TompkinsJoe and Santa ToscanoTimothy and Carolyn

TraversTrendway CorporationMike and Kim TrickerAlison TrumperGennady TsarinskyJoan UlibarriCraig and Christine VanDamJune VaughnDaniel and Colleen VegaWinfield L VerdowJoseph VersaggiTiffany VierraAshley WaiteJane M WalkerTony and Jennifer WallaceMarlene M WallerJoanne WalshRodger and Machiel WaltherTony WarnickWashington State

Combined Fund DriveKimberly WeberRon and Gail WeedenStephen T WegenerSusan WeiglLea WeldonSara WeldonJennifer L WellerKelly WellsShelly and Warren WestbrookSara WhippleMegan WhitehillDonna WienenJacqueline WilmotLloyd WinkleJennifer WinnBonnie C WoodruffRobert and Mary WozneyYourCause LLCImran ZamanLise Zapatka

Jack ZeiglerNancy ZellerKylie M Zeyen

Gifts-In-KindChildrenrsquos Hospital

ColoradoCinema Secrets IncCiscoCheryl and Todd DahlingFirefighters of Southern

Nevada Burn FoundationKenneth and Susan HarperDonna M McCartney MSWOccasional Sounds

Professional DJ ServiceJeffrey and Kathleen PelchatProvidence Firefighters

Burn FoundationProvidence Place MallAngela Seitz RNSpectrum Health Regional

Burn CenterTexas Health Presbyterian

Hospital DallasUniversity of Colorado

Hospital Burn CenterBarbara Vinacco

Memorial amp Tributes Tribute and Memorial Gifts recognize someone special celebrate the life of a loved one or commemorate a significant occasion We are honored to recognize those individuals who have given gifts to create a lasting memory

IN MEMORY OF ZACKIE BURCHAMAnna BucknerDebbie Gregory

IN MEMORY OF TIERNEY COOPERNancy and Peter Georgio

IN MEMORY OF TOM EDGELily ChatterjeeRonald ThompsonLynette and Tim Wolbert

IN MEMORY OF MIKE GRODISharon Grodi

IN MEMORY OF CLIFF HASKELLMatilda Haskell

IN MEMORY OF PENNY KISERJanet Bruner

IN MEMORY OF RONALD LEWISMary Lou Anderson

IN MEMORY OF COLIN MACDIARMIDIan MacDiarmidRebecca Tatreau

IN MEMORY OF MAYO MCCARTYLori MerchantGordon and Judith Smith

IN MEMORY OF EDWARD MECKJune Vaughn

IN MEMORY OF HUMPHREY MILLERKerri Hanson

IN MEMORY OF IRIS MILLERHer Husband

IN MEMORY OF PAT REEDDr Robert and Karen KleinRobert Reed

IN MEMORY OF AGLAIA SARELLASThe Greek Islands

Restaurant

IN MEMORY OF LEONARD AND BETTY WOJTOWICZSarah and Joseph Bazey

IN MEMORY OF BEN WOODRUFFBonnie Woodruff

IN HONOR OF SUZANNE BIEREllen Buck

IN HONOR OF KEVIN BIRNBAUMBarbara Thomas

IN HONOR OF JAMES BOSCHCheryl A Thompson-

Johnstone

IN HONOR OF ALAN BRESLAUTod BreslauDoris MucciIrene Sherr

IN HONOR OF KATHERINE BOSTICDeborah Bostic

IN HONOR OF DAVID AND CARLY BOWERSDanna and William ButlerChuck and Rosemary

DoughertyDale and Patricia Sowers

IN HONOR OF JAIDYN BOYNTONTracy DeCook

IN HONOR OF BILL BUCKEllen Buck

IN HONOR OF ANTHONY CEDENOCynthia D Cedeno

IN HONOR OF CHRISTINESarita and David Schnoor

IN HONOR OF SUE COLBYEllen Buck

IN HONOR OF KAREN COLLIGANSusan Colligan

IN HONOR OF COOP 3 STAFFKristen M Francoeur RN MSN

IN HONOR OF CAREY AURENTZ CUMMINSJanet and Forrest Aurentz

IN HONOR OF BONNIE DERELITH

Ellen Buck

IN HONOR OF SHARON EVERETTMary Jo and Ronald Bosch

IN HONOR OF ROBERT FEENEYDawn and Carl Renzetti

IN HONOR OF DEANNA FELIXStephanie and Winward

Griffin

IN HONOR OF GLBC ALUMNIKevin C Scarbrough

IN HONOR OF JOANNE GRAYGive With LibertyJeffrey Gray

IN HONOR OF ALFREDO GRUNDLERManuel Carreras

IN HONOR OF RICK HALPERTJohn and Carol Trittschuh

IN HONOR OF STACEY HARPERAmy Bateman

IN HONOR OF PATRICK HORANLesley Draper

IN HONOR OF LISA BROCKETT HUSHAWChris and Cathy Brockett

IN HONOR OF JORDAN HYDENancy M Quigley

IN HONOR OF DIANE JANSENEllen Buck

IN HONOR OF STEVE JOYNERKaren and Mark JoynerSteven E Joyner Jr

IN HONOR OF JOE KINANJune Vaughn

IN HONOR OF KAREN LABONTEJay Perreault

IN HONOR OF BROOKE LINMANLinda Lewis

IN HONOR OF MIKE amp MARY LUTZBrian Lutz

IN HONOR OF LINDA MARSOUNEllen Buck

IN HONOR OF HERBIE MILLERValerie Cottrell

IN HONOR OF MO MITCHELLLisa Staton

IN HONOR OF MIDGE MOLLENKOPFEllen Buck

IN HONOR OF KATE MOORE AND THE MOORE-SOBEL FAMILYSamuel J Moore-Sobel

IN HONOR OF MARIA OrsquoDONNELEllen Buck

IN HONOR OF JIM PAULEY AND GARY KEITHInternational Association of

Fire Chiefs

IN HONOR OF CHARLENE PELLJohn H King

IN HONOR OF NICOLE PERRY AND PAM PETERSONKelly Lynch

IN HONOR OF GEORGE PESSOTTITheresa FletcherLeonard and Mary NugentThomas PessottiTMMC Inc

IN HONOR OF DIANE PHILIPSKaryn DigiorgioHilary DyeElizabeth NelsonSusan Rosenberg

IN HONOR OF BARBARA AND KEN QUAYLERosemary J VossJudy L Phillips

IN HONOR OF DIANA REEVESEllen Buck

IN HONOR OF GINA RUSSOLisa Richards

IN HONOR OF DOUGLAS C SCHMIDTJackie Bishop

IN HONOR OF SHANNONMary and Edward Holden

IN HONOR OF PARRY SHOEMAKEREllen Buck

IN HONOR OF NORMAN SILVALucy Giametta

IN HONOR OF RYAN SINKEMiranda RossAshley Waite

IN HONOR OF DAVID VOGELThomas DoyleSteven and Giena Vogel

IN HONOR OF AMY WOODMike Kelsey and Corrina

OrsquoBrien Kelsey

IN HONOR OF CRAIG YEITERShowboat Automotive

Supply Inc

IN HONOR OF OUR PATIENTS AND THEIR FAMILIESLinda Courtice

IN HONOR OF THE FOUNDERS OF PHOENIX SOCIETYChief Mark H John and

Gabrielle N Minor

IN HONOR OF ALL BURN SURVIVORSKatherine HolmesPamela F MahoneyCherersquo PrestonDonna WienenKylie M Zeyen

IN HONOR OF BEING FAMILY OF A BURN SURVIVORKam Yu ChanPamela ChanLarry and Susan FallonMary Fallon and Patricia

FallonHiu Hung HoHoi HoLacey Maguire Powell

Donrsquot Miss This Opportunity PEG Scholarship Applications Due June 30Each year the Phoenix Society awards several scholarships to burn survivors who are attending college or technical school The program to date has issued a total of 163 To learn more about this scholarship program and download an application visit wwwphoenix-societyorgpeg Completed applications and all supporting documentation for the 2017 Phoenix Education Grants must be submitted no later than June 30 2017

PEG is made possible by generous gifts from individuals and by a generous 10-year pledge of $25000 per year from our partner AlloSource

All monetary awards are made possible by contributions to the PEG endowment fund If you would like to help other burn survivors continue their education please make a contribution to the PEG fund at wwwphoenix-societyorgpeg

1835 RW Berends Dr SWGrand Rapids MI 49519-4955

6164582773 | 18008882876fax 6164582831wwwphoenix-societyorginfophoenix-societyorg

18008882876fax 6164582831wwwphoenix-societyorginfophoenix-societyorg

Non-Profit OrgUS Postage

P A I DGrand Rapids MIPermit No 679The Phoenix Society Inc

SAVE THE DATE

DALLAS TXOCTOBER 4-7 2017

PHOENIX WORLD BURN CONGRESS 2017

CONFERENCE HOTELSheraton Downtown Dallas

Vision Partner

_GoBack