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- Dana NakamuraBurn AmbassadorRoleBurn Aftercare and Survivor Outreach CoordinatorLocationWinston Salem, NCFun Facts
Dana (pronounced “Donna”) grew up in Hawaii and was part of the world’s largest ukulele band and can play “Stars and Stripes Forever” behind her head. She is an avid reader of burn survivor-written books, and anything by Alice Hoffman and Nicholas Sparks. In her next life, she dreams of being a forensic pathologist. She loves to can pickles and jam, and has dabbled in nearly all the crafty projects imaginable, even organizing craft sales to benefit burn survivors.
Dana’s Burn Injury Journey
Dana has worked with burn patients since 1985. It wasn’t until 2004 that she learned her father had experienced a burn injury while working in a smelting factory during WWII. Early in her career she had planned to major in occupational therapy (OT) and become a special education teacher, but her path changed to focus on OT and psychology after she attended a medical lecture on burn care and rehabilitation. She ended up completing a student internship and then was hired to work at the Level 1 Trauma Center in Seattle, which housed the only burn unit in the Washington, Alaska, Montana, and Idaho (WAMI) region. Since she started in burn rehabilitation, she has worked at burn centers in Seattle, Winston Salem (North Carolina) and New Orleans. Her journey has offered opportunities to meet and learn from leaders in the burn world, and to become a burn ambassador for the MSKTC.
What does Dana think of the quality, usefulness, and user-friendliness of the MSKTC resources?
The MSKTC resources are well-written, easy to understand, founded on evidence-based practices, and provide practical information to frequently asked questions in burn care. The MSKTC.org website is easy to navigate, and the variety of presentation mediums appeals to all audiences. The translation of information into other languages, with an emphasis on cultural diversity, is appealing for non-English speakers. The regular updates to resources based on current research and treatment practices is greatly appreciated. Rather than completing literature searches and developing my own resource materials, I can conveniently go to the MSKTC website and find just what I am looking for to share with burn survivors/families and burn center staff.
Why does Dana want to be an MSKTC ambassador?
Dana works as a Burn Survivor Aftercare and Outreach Coordinator at Atrium Health Wake Forest Baptist Burn Center. This position was created per the recommendations of the American Burn Association (ABA) Verification Committee to enhance services for burn patients and their families. After treating burn patients for over 38 years, Dana has come full circle in her passion to guide burn survivors/families on their journeys to healing and recovery. Dana started her career as part of the burn therapy team that worked on the Burn Model System center grant in its infancy. Dana learned a great deal about networking and building burn rehab programs and professional connections from the survivor and medical leaders while working at three ABA verified burn centers (in Seattle, Winston Salem, and New Orleans). With her new role as the MSKTC ambassador, she can devote her time and efforts to aftercare programs that further grows vital community partnerships within which the MSKTC can act as a vital resource to those in need.
What has Dana done as an MSKTC ambassador?
Dana has many ideas for disseminating the MSKTC information and resources to burn survivors/ families whom she works with directly, and with professional staff. There are opportunities to share knowledge and influence the learning of others at all levels within the medical center she works from. Dana envisions sharing the MSKTC resources via educational presentations at chapter meetings via partnerships with the burn survivor support groups, fire service personnel and Fire & Life Safety Educators. Requests are granted for ongoing education to learn more about burn survivors/families and support systems, and what the extended burn community can do for these folks on their journeys to healing, recovery and reintegration. As chair of the Southern Medical Association (SMA) Southern Region Burn Rehabilitation Committee, Dana organizes workshops for burn therapy practitioners, which will provide another avenue for dissemination of MSKTC information.
- Esther KlangSCI AmbassadorRoleAccessibility Tester, Product Tester, Disability AdvocateLocationBrooklyn, NYFun Facts
Esther will appear shy and reserved when you first meet her, but once you get to know her you will see that she has a great deal of unique lived experiences and perspectives to share and is not afraid to share her true opinions on various different topics including but not limited to; politics, social issues, disability awareness, and physical and digital accessibility. Her main passion in life is to help other disabled people gain access to technology no matter what their functional abilities are as she understands how lonely and isolating it can be when you are unable to access technology. Esther also loves testing new products, websites, and apps to make sure they are accessible to assistive technology users, especially if they are disability related. She also enjoys answering surveys, writing on, and scrolling through social media, and reading about disability-related products.
Esther’s Spinal Cord Injury (SCI) Journey
In 2006, at the age of 10, Esther had a brain stem tumor removed leading to her journey with TBI/SCI for the past 18 years. Esther is a 29-year-old woman who is a quadriplegic and has had a tracheostomy and she now uses a ventilator at night, has shallow breathing, and vocal paralysis which makes oral communication difficult. She has found that many people associate her trouble with communication as a mental impairment causing some people to treat her like a child, a prejudice that exists even within her own family.
She has found support by surrounding herself with people who understand her, both in person and by being a part of online communities. It is a message she shares with other wheelchair users, as she has found it a sure-fire way to prevent life from becoming lonely. Additionally, she has come to have patience with herself and with other people, adopting the mentality that not everything has to be perfect, but most importantly that one should be educated about their injury and the secondary conditions associated with it.
Esther understands that having the best information and being educated on the pertinent medical conditions you may develop at different stages of your life will make you feel more empowered and in control of your life. This knowledge can be the difference between life and death, and so she actively shares helpful resources like those composed by MSKTC with others in the wheelchair user community.
What does Esther think of the quality, usefulness, and user-friendliness of the MSKTC resources?
Esther learned about MSKTC and their amazing resources when she was introduced to the United Spinal Association in the fall of 2021, 15 years after her injury. She found MSKTC’s resources extremely helpful as they clarified many questions and helped her understand many of her feelings. She has come to believe that rehabilitation centers and their therapists have a duty to inform and educate all their patients and family members about the helpful resources from MSKTC. Esther particularly values how the MSKTC resources can be easily shared across all her social media pages.
Why does Esther want to be an MSKTC ambassador?
Esther wants to be a TBI/SCI ambassador for MSKTC because wants to become more open, transparent, confident, and accepting of her disability. She believes that through her story and shared experience, she may help others with disabilities from experiencing the loneliness, isolation, and unnecessary misunderstandings and arguments that she did.
What has Esther done as an MSKTC ambassador?
Esther shares MSKTC resources on all of her social media pages and in many Facebook groups pertaining to people with TBI and SCI. She is in the process of developing resources on her website and blog. When other wheelchair users in her community reach out to her with questions and advice, the MSKTC resources are an easy source that she can point them to.