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- Edward SantosBurn AmbassadorRoleResearch Coordinator of the Boston-Harvard Burn Injury Model SystemLocationBoston, MAFun Facts
Growing up in NYC, Edward was exposed to a lot of people, so he always had an affinity for learning about different languages and the many cultures they belong to. He loves exploring new parts of Boston and trying new foods. He is a native Spanish speaker but learned English as a second language and French as a third. When he was in college, he joined the Salsa Club and learned that he loved dancing Salsa and Bachata. Now he feels he can not only express himself throughout dance while doing a little cardio, but is also able to meet people from all walks of life who have a passion or interest in dance!
Edward’s Burn Injury Journey
Edward is a research coordinator of the Boston-Harvard Burn Injury Model System. He recognizes that Burn Injuries follow people beyond their hospitalization and have many psychosocial impacts on people’s everyday lives beyond physical manifestations. A major challenge he has observed in people with burn injuries is what a challenge it can be getting the necessary resources and services outside the hospital. This can be due to many factors such as insurance limitations, the need to return to work, the uncertainty of the future impacts, or how much of their previous daily lives are impacted by their burn injury. He has observed how much individuals with burn injuries can benefit from services like PT/OT/SLP/RT during inpatient rehabilitation and during their surgical hospitalization. Engaging with those who understand what it is like living with a burn injury has led Edward to appreciate the importance of peer support groups and organizations such as MSKTC in finding resources for this population. As a research coordinator, he collects data on a longitudinal study looking at the long-term outcome of people with burn injuries, and this data helps in seeing how the care of future burn survivors can be improved. Edward participates in events like Burn Awareness Week and other community events to help spread awareness of burn injuries and helpful resources that can be found at MSKTC.org.
What does Edward think of the MSKTC resources?
MSKTC provides resources on many different topics that people with burn injuries, family, friends, or anyone interested in learning more can easily access. The factsheets are easy to read and have many formats available that can make them more accessible to people’s needs or preferences such as videos, infographics, or podcasts. The website is very user-friendly and has many resources available for people living with burn injuries in different age groups and/or stages of life. The hot topic section has information that sometimes may be difficult to ask about. Some issues may not affect someone’s life until after they leave the hospital, and when that happens MSKTC is an easily accessed resource. As a burn ambassador, Edward plans to help others and burn survivors wanting to learn more about the resources available through MSKTC and provide them with information on topics that could help them understand more of what they might encounter as a person living with a burn injury.
Why does Edward want to be an Ambassador?
As a research coordinator and data collector, Edward has learned so much about burns, burn injuries, and the burn community. He wants to continue to learn, empower and inform burn survivors about the MSKTC resources available to them and to connect them with others who can offer support. He feels that through his work he can also help expand the resources that MSKTC offers to the Spanish-speaking population. Ultimately, he wants to help people with burn injuries live well.
What has Edward done as an Ambassador?
Edward has provided feedback to MSKTC regarding ways that resources can be helpful, not only to people with burn injuries but also to new and current researchers working with the burn population. He has given feedback on limitations in research data collection in longitudinal studies like the Burn Model System. He works to spread awareness about Model System research and resources with newsletters, social media highlights, and hearing from burn survivors in events such as the National Burn Awareness Week and events with local schools. He is currently working on a future project aimed to help burn survivors develop tools/resources for managing their burns as a chronic condition. To this end, MSKTC offers many useful and easily accessed resources. Edward has provided MSKTC resources to people with burn injuries, and their loved ones, during follow-ups and outpatient clinics.
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- Diana TenneyBurn AmbassadorRoleSurvivorLocationMassachusettsFun Facts
Diana loves the outdoors. She loves gardening, working in her yard, bicycling, and kayaking. Constantly evolving her interests, Diana began with chair yoga shortly after discharge from the hospital then progressed to regular yoga classes. From there she became a Zumba instructor and is a massive Zumba enthusiast.
Diana's Journey with Burn Injury
Diana was burned in an accident while using gasoline to burn green tree limbs in her backyard in 2010. As a burn survivor with third degree burns over 90% of her body, she had to overcome many challenges including learning to dress and feed herself and learning about her ‘new body.’ Diana researched everything she could so that she could be a well-informed and an empowered patient while working with her rehabilitation doctors, primary care providers, burn surgeons, and burn team to understand the injury and how to better care for herself. The same year she was released from the hospital, she became a peer mentor to support other burn survivors and facilitate burn support groups as past President and currently board of directors, of Burn Survivors of New England. She also helps make research more relevant to the needs of burn survivors by participating in burn research activities, educating researchers about burn injury from a survivor perspective through her role as the co-coordinator of Knowledge Translation for the Boston Harvard Burn Injury Model System, and encouraging researchers to listen to burn survivors.
Why does Diana want to be an ambassador?
Diana’s primary goal in life is to help other burn survivors. She wants to bring resources to those in need. Diana has a deep understanding that burn survivors need to address emotional trauma as well as the physical trauma. By being an ambassador, Diana can share the MSKTC resources that address both areas. She wants to empower burn survivors with the MSKTC research-based information so that they can live their new normal lives regardless of the size of their burn.
What has Diana done as an ambassador?
Diana is an active participant in the burn community where she shares MSKTC resources with burn survivors and caregivers every single week. She has been referring burn survivors to the MSKTC website ever since she learned about it 11 years ago. Diana has also been actively engaged in MSKTC work. She provided feedback on many MSKTC resources. She was featured in the MSKTC video entitled ‘Exercise After Burn Injury’ that won a 2017 Telly award.
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- Kimberly McMurrayBurn AmbassadorRoleSurvivorLocationWashingtonFun Facts
Kimberly has worked as a fire commissioner since 2020. Giving back to her community and being an integral part of a fire department has given her the gratification of feeling like she makes a difference. She is a people person and enjoys hearing other people’s life stories. She enjoys watching documentaries and true story movies and traveling with her husband. There are only 6 US states and 2 Canadian provinces to which they have not visited. They have had the privilege of exploring Australia, New Zealand, Italy, Mexico, Grand Cayman, Caribbean, Ireland, and Netherlands. She enjoys baking, gardening, and cooking, using fresh herbs and vegetables, and trying new recipes with various ingredients for her family. They have created a rating scale for her experiments as “make again” or “this was really good once.” She said she appreciates the honest feedback as it helps to refine her skills. In the summer they also enjoy time on their boat and kayaking. If she is not on the boat, she enjoys their vintage Mazda Miata convertible. She also considers herself immeasurably blessed with friends.
Kimberly's Burn Injury Journey
At 17, Kimberly experienced third-degree burns over 65% of her body when fuel was poured over an open fire pit, causing an explosion of fire to engulf her. Her 19-year-old boyfriend died from his own injuries in the incident. She spent 95 days in the Harborview Burn Center in Seattle. 8 weeks were spent in the ICU fighting for her life. While the physical challenges were enormous, she notes that the mental challenges were the most difficult to overcome. After being discharged from the hospital, she was unprepared for the cruelty of people or the insults they would throw. During her recovery, she spent many months in a valley of depression and hopelessness.
Kimberly came to the realization that to persevere she needed to accept her “new normal”, stand up for herself, and start living again. She started speaking about her injury openly at high schools, universities, churches, and burn conferences. After getting involved with the American Burn Association and the Phoenix Society she became a certified Survivors Offering Assistance in Recovery (SOAR) volunteer. She has even served on the HMC Burn Center Consumer Advisory Board (CAB) and held school re-entry assemblies. Through these organizations and other community volunteer programs, she shed her cocoon and flourished. Helping others was a tremendous source of personal healing. Her favorite quote is from Chuck Swindoll; “Life is 10% what happens to you and 90% how you respond.” She finds it especially true for anyone who has experienced trauma.
Why does Kimberly think people should consider referring to the MSKTC resources?
When Kimberly was burned, back in 1984, there were very few resources available. All she had access to focus on was wound care post-discharge. School or work re-entry programs did not exist to assist with the traumatic transition of re-joining society after 3 months in the hospital. MSKTC has answers and help for all burn-related questions. There are resources for the basics such as itching, and more personal topics such as intimacy and everything in between; food, exercise, PTSD, etc. Some things are difficult to talk to others about, but you can get the answers and help you need from the website. In recovery, it is also helpful to talk to others who have walked this path, and MSKTC provides resources to connect with others as well. Kimberly was surprised and delighted that there were resources she could share with her friend who has multiple sclerosis in the form of wheelchair options. The website is useful and user-friendly, and if you do not find what you are looking for, they have a question box you can use to reach their team of responsive professionals.
Why does Kimberly want to be an MSKTC ambassador
In her early days of recovery, Kimberly felt lost, discouraged, and struggled with her survival. She crossed numerous stepping stones before she was able to reach a place of acceptance regarding her visible scars. When she was able to turn her internal dialogue from negative to positive, she decided to dedicate herself to educating the public about burns and advocating for people after a burn injury. As an ambassador, she can continue to be a source of encouragement, compassion, and assistance to her fellow burn survivors. She feels that the best way to support others is to walk beside them so that no one feels alone or that they must overcome their burns on their own. There are a lot of people in the MSKTC Ambassador program who are available to help and countless resources are at your fingertips through their site.
What has Kimberly done as an MSKTC ambassador?
When Kimberly gives presentations, she is sure to include the MSKTC web address and pertinent information as one of her vital resources. She is sharing the MSKTC resources through her social media and has reached out to colleagues who work in the fields of traumatic brain injuries and spinal cord injuries to inform them of its efficacy. Kimberly reviewed and provided feedback on the MSKTC resources to ensure they are user-friendly and relevant to burn survivors.