Meet Ambassador Edward Santos
- Edward Santos
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.