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BURN SURVIVORS OF NEW ENGLAND

Meetings are currently held virtually on the 2nd Tuesday of every month at 6pm.

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MSKTC BURN INJURY RESOURCES

Check out these wonderful resources developed by the model systems on living with burn injury!

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LIBRE PROFILE

The LIBRE Profile is dedicated to understanding and improving the social recovery of burn survivors For more information visit LIBRE Profile or call 617-952-6302

Featured Videos

Twitter

Join the CLIMB study to help us improve recovery and care. Your participation can make a big difference. Check your eligibility today! 🌟 #BurnSurvivors #CLIMBStudy #Recovery #Research #BHBIMS https://redcap.link/CLIMB

Want to get involved in research? The study is either a 1-hr interview ($25) or a 2-hr focus group ($40). For more info: https://redcap.link/RESTOREstudy

It's Fire Prevention Week! This year's theme is "Smoke alarms: Make them work for you!" This year's campaign strives to educate everyone about the importance of having working smoke alarms in the home. @NFPA #FPW #firesafety #burnsurvivor

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Featured Publications

A Preliminary Study on qEEG in Burn Patients With Chronic Pruritus.

Miraval FK, Shie VL, Morales-Quezada L, Santiago C, Fernandes-Marcondes B, Nadler D, Ryan CM, Schneider JC, Fregni F.

This study was undertaken to compare the electroencephalography (EEG) changes in burn patients having primary symptoms of chronic itching (pruritis) and their paired healthy subjects. There was evidence that chronic pruritus in burn subjects may be associated with brain reorganizational changes at the cortical level characterized by an EEG pattern.

Fatigue Following Burn Injury: A Burn Model System National Database Study.

Simko LC, Espinoza LF, McMullen K, Herndon DN, Suman O, Fauerbach JA, Kowalske K, Wiechman S, Kazis LE, Ryan CM, Schneider JC.

This study's objective was to determine the frequency and severity of fatigue over time and to identify predictors of fatigue in the adult burn population. Fatigue symptoms are common after burns and many burn survivors continue to report symptoms at 2 years post-injury. Burn survivors did not return to pre-injury fatigue levels, highlighting the importance of understanding and monitoring fatigue.

Patient-reported Outcome Measures: A Stethoscope for the Patient History

Griggs CL, Schneider JC, Kazis LE, Ryan CM.

This paper is a surgical perspective editorial article that looks at patient-reported outcome measures (PROMs) as powerful tools within the physician-patient connection. They found that patient’s active engagement in medical care through PROMs holds the potential to tailor the care process and overall health to individual biopsychosocial needs. Ultimately, if physicians and health care systems embrace the opportunity that PROMs present, the dual goals of value-based and patient-centered care can be achieved.

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MSKTC

Knowledge Translation Center (MSKTC)

The MSKTC summarizes research, identifies health information needs, and develops information resources to support the Model Systems programs in meeting the needs of individuals with traumatic brain injury (TBI), spinal cord injury (SCI), and burn injury.

Burn Survivors of New England

Burn Survivors of New England (BSONE)

The BSONE is a nonprofit organization that supports and empowers burn survivors and their families as they build active and engaged lives. Their efforts focus on bringing peer support to burn survivors and their families. They hold several annual events to help bring the burn survivor community together and raise funds to award scholarships to send New England Burn Survivors to the Phoenix World Burn Congress.

Phoenix Society

Phoenix Society

The Phoenix Society for Burn Survivors is the leading national nonprofit organization dedicated to empowering anyone affected by a burn injury. Through Phoenix SOAR (Survivors Offering Assistance in Recovery), World Burn Congress, Phoenix Education Grant, online peer support, and an online resource library, the Phoenix Society for Burn Survivors works to help burn survivors throughout their recovery process.

American Burn Association (ABA)

American Burn Association (ABA)

The ABA and its members are committed to improving the quality of care provided to burn patients by stimulating research, fostering prevention efforts, and providing continuing education courses, annual scientific meetings, and scientific publications.

International Association of Firefighters (IAFF)

International Association of Firefighters (IAFF)

The IAFF works to better fire safety, prevention, and education. It represents more than 303,000 full-time professional fire fighters and paramedics and is one of the most active lobbying organizations in Washington, DC.

National Fire Protection Association (NFPA)

National Fire Protection Association (NFPA)

The NFPA is a global nonprofit organization that is devoted to eliminating death, injury, and property and economic loss due to fire, electrical accidents, and related hazards. They do so by educating the public about fire safety, acting as advocates, supporting research, and training individuals on codes and standards.

Boston Firefighters Burn Foundation

Boston Firefighters Burn Foundation

The Boston Firefighters Burn Foundation is comprised of Boston Firefighters who, on their days off, provide both emotional and financial support to burn survivors and their families. They host fundraising events, build relationships, and provide services where needed.

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