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- Jeff PagelsSCI AmbassadorRoleSurviverLocationWisconsinFun Facts
Jeff doesn’t want a bad hair day to ruin his life. He remarked, “When something horrible happens, it takes about 2 weeks and a pitcher of beer to make it something that is funny, I found.”
Jeff's Journey with SCI
Jeff had his spinal cord injury (SCI) in 1984 when he was hit by a falling tree that he was cutting down. Always climbing higher, he doesn’t let the SCI stop him from a full and active life. Jeff pushed the 26.2-mile Chicago Marathon 1 year to the day after his injury. This was the beginning of his wheelchair athletic life. Jeff enjoys many sports and activities, except for bowling and parachute jumping. He serves in a leadership role on many nonprofit organizations that benefit people with SCIs. Jeff is also a peer counselor for newly injured paraplegics.
Why did Jeff want to be an ambassador?
Jeff appreciates the high quality of the free research-based resources from MSKTC and the valuable support they give people living with SCIs. He wants to help spread the word about these resources so more people can benefit from them.
What has Jeff done as an ambassador?
Jeff has shared MSKTC resources with friends in the SCI community. He plans to embed MSKTC resources in his peer counseling efforts and advocacy work. Jeff also plans to share MSKTC resources to help health care providers learn how to better care for people with SCIs.
- Juan GaribaySCI AmbassadorRoleSurvivorLocationCaliforniaFun Facts
Juan has a great sense of humor and loves a good joke. He played wheelchair basketball with the Rancho Renegades for 15 years. He is also an avid skier.
Juan's Journey with SCI
When Juan was 20 years old, he was part of a gang. During that time, he was shot, and he sustained a spinal cord injury (SCI). After his SCI, Juan’s life changed for good. While he was in prison, Juan thought about his life; he decided to change and become a good citizen. When he got out of prison, Juan volunteered at the Rancho Los Amigos National Rehabilitation Center. In this role, he helped others with SCI. In 1999, he got a scholarship from Rancho Research Institute (RRI). It was part of a grant from the U.S. Department of Education’s National Institute on Disability and Rehabilitation Research. Later, he was the program manager at the Rancho Violence Recovery and Prevention Program. In this role, he helped patients who were newly injured by violence or an assault. His experience as an SCI survivor inspires his family and others to overcome the obstacles in their lives.
Why did Juan want to be an MSKTC ambassador?
Juan believes it is important to share the MSKTC’s research-based information, especially with people with a new SCI. For people with an SCI, Juan has shown them that there is hope and that there is light at the end of the tunnel. Juan is grateful for the support he received when he was first injured. Such support was like a bridge for Juan to a full and productive life. He wants to be that bridge for others. He also wants to let people know that their lives are not over because of their SCI.
What did Juan do as an ambassador?
Juan has used MSKTC’s resources on SCI to educate patients with SCI and their families. He prints out MSKTC’s resources and gives them to patients when he visits them. Juan also talks about MSKTC’s resources when he goes to support groups for people with SCI. He includes his MSKTC ambassador title as part of his email signature. He also includes a link to the MSTKC’s website so that people can find those resources. In the future, he plans to offer MSKTC’s resources at resource fairs and in RRI newsletters.
- Ashraf GorgeySCI AmbassadorRoleSCI ResearcherLocationVirginia
Dr. Gorgey's Journey with SCI
While Dr. Gorgey was completing his PhD, his primary mentor was working on a SCI project at the Shepherd Center. Although Dr. Gorgey knew very little about SCI prior to his participation on this project, he became fascinated with the field and was eager to learn more about SCI. Later in his career, he moved to Virginia to collaborate with a different group of researchers. Together, they published nearly 140 manuscripts on SCI-related topics. Dr. Gorgey’s research helps those with the injury live more fulfilling lives.
Why does Dr. Gorgey want to be an ambassador?
Although Dr. Gorgey enjoys being a researcher, he finds it exciting and rewarding to connect directly with SCI patients. One-on-one contact allows him to see the SCI topic areas that patients are struggling with and direct them to the appropriate resources, like those from the MSKTC. Being a prominent SCI researcher and having over 12,000 Facebook followers, he wants to expand MSKTC’s audience by disseminating their high-quality SCI resources to those that need them.
What does Dr. Gorgey do as an ambassador?
Dr. Gorgey has and will continue to share MSKTC resources to his wide audience on social media. He has been impressed by how powerful information sharing is through social media such as Facebook and Twitter and how well it is received, not only by SCI patients and families, but researchers as well. In addition to social media, Dr. Gorgey plans to share the MSKTC and the Ambassador’s Program at conferences and encourage his colleagues to becoming ambassadors.
- Laura LauretaTBI AmbassadorRoleSurvivorLocationColoradoFun Facts
Because of learning disabilities earlier in her life, Laura had low reading skills before her TBI. But she beat the odds and learned to read well after her car crash. Reading is now her favorite pastime.
Laura's Journey with TBI
Growing up, Laura had 13 mild concussions. In 2011, she was in a car crash, which caused a traumatic brain injury (TBI). After the crash, Laura started to get terrible headaches. But she did not let this stop her from living a fulfilling life or sharing her experiences to help others. Laura works for the Brain Injury Alliance of Colorado. She co-teaches a class on self-advocacy and independent living. She also runs her own blog, which is now an LLC. In her blog, she shares her experiences with TBI and concussion. She also shares resources that have helped her on her journey.
Why does Laura want to be an ambassador?
Laura feels like she has learned so much from her experience. She wants to do all she can to share what she has learned with the TBI community. She is grateful for MSKTC’s free, research-based resources. She has not found another organization with the same variety of high-quality resources about TBI. Laura wants to share these resources with her networks so that others can benefit from them like she has.
What has Laura done as an ambassador?
Laura has shared MSKTC’s resources with a lot of folks to educate them about TBI. This includes congressional staff. She has ideas for ways to add MSKTC’s resources to her class on self-advocacy and independent living. She plans to create a reference list on her blog with MSKTC’s helpful resources on TBI. Laura also plans to share MSKTC’s resources with Brain Busters. This is a virtual TBI support group she started. The group meets to do brain-stimulating activities. She plans to print out MSKTC’s resources and add them to the Little Free Library in front of her house.
- Leilani StoneBurn AmbassadorRoleCaregiver, ClinicianLocationCaliforniaFun Facts
Leilani has a fun spirit and is full of energy and enthusiasm. She likes to lighten very difficult situations by participating in the fun activities that she organizes for kids with burn injuries. Leilani continues to be very involved with the local community because, as she says, “sometimes it does take a village.”
Leilani is the mother of two boys. When her one son was 14-years old, he was burned in a propane gas explosion. He spent 3 weeks in the hospital and another year in recovery. Driven by her newfound passion to help burn survivors and their families, she left her career as a Program Manager for a detention center and began working as the director of Burn Survivor Services for the Burn Institute. She found MSKTC’s burn resources very beneficial for burn survivors and their families. Leilani incorporates these resources into the work she does now to help families in burn recovery.
Why does Leilani want to be an ambassador?
Leilani found MSKTC’s resources to be very clear and evidence-based, which has helped to inform her about her son’s recovery. As the Director of Burn Survivor Services at the Burn Institute, Leilani works to instill best practices on how to treat and manage burn injuries after clients are released from care, including managing the effects on families. She wants to continue disseminating MSKTC resources to burn survivors and their families in the burn community.
What has Leilani done as an ambassador?
At the Burn Institute and the University of California San Diego Health Regional Burn Center, Leilani works with the clinic’s social workers to disseminate MSKTC’s burn resources to clinicians and burn patients and their families. Wanting a way to condense all MSKTC’s information and make it easy for people to access, she designed a postcard with a QR code that links to the MSKTC burn resources page. She also emails patients and their families’ links to MSKTC’s resources. Leilani shares MSKTC’s Spanish resources with Spanish-speaking clients and the large Spanish-speaking community in her area, which has been helpful.
- Kaia WileyTBI AmbassadorRoleOccupational therapist (MS, OTR/L, CSRS, MSCS, CBIS) for INOVA Health SystemLocationVirginiaFun Facts
Kaia is an animal lover! At the start of the pandemic, she adopted two cats. She also became interested in bird-watching. In her free time, she likes to travel, do yoga, rock climb, and kayak.
Kaia is an occupational therapist (OT) who works with patients who have a traumatic brain injury or TBI. Since she was a child, Kaia has wanted to help people achieve optimal independence and reach their personal goals. Kaia works with TBI patients of all ages. She helps them with daily tasks, like dressing and brushing their teeth, and other tasks that help them improve their functional skills. She works to bridge the transition to independence after patients leave the hospital and beyond.
Why did Kaia want to be an ambassador?
As an OT, Kaia is a passionate advocate for her patients. She distributes user-friendly information to the public to raise awareness about her patients and those living with a TBI who may not be well represented. She likes that MSKTC offers plain language resources for people with a TBI, their caregivers, and the public. She also likes that MSKTC uses a variety of communication strategies. These include infocomics and videos, which target different learning styles and interests. She looks forward to becoming an affiliated resource for her community.
What does Kaia do as an ambassador?
Since she became an ambassador, Kaia has shared MSKTC resources with her patients. These resources discuss driving after a TBI, emotional changes after a TBI, and making healthy choices after a TBI. She also encourages her patients to share these resources with their friends and families. Kaia is working on a pamphlet for patients about recovery from TBI. She also wants to host a community driving event.
- Delia LinchTBI AmbassadorRoleCase Manager and Nurse Coordinator at Loma Linda University Medical Center Rehabilitation InstituteLocationCaliforniaFun Facts
Delia believes her educational background in education has given her the ability to better educate patients and help them understand complex information. Delia enjoys hiking and painting in her free time. Above all, she loves meeting new people and hearing their stories. She likes to be involved with mission trips organized by Loma Linda University Heath.
Delia Linch is a case manager and nurse coordinator for community physicians at the Loma Linda University Medical Center Rehabilitation Institute in Loma Linda, California. Although Delia has an educational background in education and engineering, she found nursing and working in rehabilitation to be her passion and enjoys seeing patients lead fulfilling lives after TBI. Delia enjoys thinking of innovative and creative ways to help her patients and best serve their needs.
Why does Delia want to be an ambassador?
Delia has seen first-hand the stress and anxiety that surround TBI, not only for patients, but family members as well. She strives to help patients and families feel more understood and better prepared to take on such a drastic life change. Wanting to provide her patients with reliable information on a variety of TBI topics, Delia has become very familiar with MSKTC TBI resources and wants to continue to share them with her patients, their families, and the clinicians at her institution.
What does Delia do as an ambassador?
Depending on what information her patients and their families are looking for, Delia shares MSKTC’s resources through printed handouts, as well as QR codes, making materials easily accessible. She has found that patients appreciate the wide range of resource formats, specifically videos and infocomics. In addition to disseminating MSKTC materials to patients, Delia has promoted MSKTC to her colleagues, encouraging them to share the resources with their patients as well. She has even recruited several new MSKTC ambassadors in the process.
- Patrina TorresTBI AmbassadorRoleFounder and Clinical Director or Totally Healed International and Founder of Crossroad Women and Family ServicesLocationNew YorkFun Facts
During elementary years, Patrina’s grandmother convinced her parents to enroll her in acting school in New York. She enjoys photography, writing poetry, children’s stories, nonfiction books, and blogging.
Patrina's Journey with TBI
Patrina ran into a wall during a childhood play and suffered a traumatic brain injury (TBI). She had a second TBI shortly after in a car accident. As a result, she had problems at school, mood swings, and experienced feelings of depression, fear, and anxiety. Although she did not receive treatment for TBI, she went on to have a great experience in school and developed a love for learning. More recently, her son experienced a concussion while playing football and began to show a lot of the same symptoms Patrina noticed in herself after her brain injuries. Currently, Patrina is a founder and clinical director of Totally Healed International, a counseling service started in North Carolina that helps those with TBI grow past their pain and trauma. She also has an organization called Crossroad Women and Family Services, which she uses to share resources for those with TBI that are confused on where to seek help.
Why does Patrina want to be an ambassador?
Patrina believes that if you have overcome a challenge or problem in your life, you have a responsibility to help someone else do the same. Not receiving proper treatment for her brain injuries and not understanding why she was having certain symptoms, Patrina wants to make the experience with TBI better for others. She finds it important to provide people with MSKTC’s practical, user-friendly, and evidence-based resources not only to well-inform them of their injuries, but to help them come out of hiding and see that they are not alone in this journey.
What does Patrina do as an ambassador?
Patrina has shared MSKTC’s resources with folks involved with her two organizations to educate them about TBI. She has ideas for ways to include MSKTC’s resources on the Crossroad Women and Family Services website. The website has an entire section dedicated to TBI where Patrina shares empowering and educational resources for those with the injury. She also plans to provide parents of children with TBI MSKTC’s resources and involve social media interns to help disseminate MSKTC’s resources across her organizations’ various platforms. She also plans to share MSKTC resources through her newsletters.
- Brooke HayesTBI AmbassadorRoleCaregiver/Advocate/ActivistLocationCentral OhioFun Facts
We have a house full of pets, two cats, Hank and Bingus, two green-Cheeked conures named Apple and Kiwi, and one dwarf hamster. Aidan and I love biking, camping and backpacking and are exploring trying out bike-packing in Northern Michigan next summer.
Brooke's Journey with TBI
I’ve been a Registered Nurse for over 20 years. My experience runs the gamut-Intensive Care, Emergency Department, Oncology, Orthopedic Trauma, Case Management, Disease Management and Utilization Management. Despite working in so many different areas of nursing, I had very little experience with Traumatic Brain Injuries. That all changed on 01/25/2022, when my only child, my 22 year-old son Aidan, suffered a severe TBI as a result of a single car accident on his way to work. Aidan’s injuries included bilateral temporal bone fractures, left occipital fracture and multiple skull base fractures. He had subarachnoid hemorrhage, intraventricular hemorrhage, subdural hematomas, diffuse axonal injury and a left internal carotid artery dissection which resulted in multifocal left-sided ischemic strokes. Upon my arrival at the hospital, I was told his injuries were almost certainly not survivable. In the event he did survive, he would have no meaningful neurological recovery. Over the course of the first night, as his strokes evolved and his brain began to swell and shift, I was advised the picture was as grim as could be. Multiple doctors told me there was no hope, it was only a matter of time. Aidan, however, had a different plan.
We are now approaching 11 months post TBI. He was able to transfer to Shirley Ryan Ability Lab in Chicago for acute inpatient rehabilitation just over 3 weeks after his accident. He stayed there for 2 months as an inpatient and another 2 months as an outpatient. Today, Aidan manages almost all of his own daily activities, with the exception of organizing his medications, arranging transportation and scheduling his medical appointments. He makes many of his own meals, does his own and his girlfriend’s laundry, keeps up the yard, cares for his pet birds, plays video games and hits the gym 3 times a week. He still receives speech, occupational and physical therapy twice a week, as well as participating in aphasia conversation groups, TBI support groups and adaptive adventure sports. Soon, he’s looking forward to beginning vocational rehab and getting back to work as an electrician with IBEW 683. We have so much hope for his future.
Why does Brooke want to be an ambassador?
When Aidan suffered his TBI, I didn't know where to turn for information and guidance. There is a lot of misinformation and bad information out there...and I was so exhausted. I needed good, research-based information that didn't require a Herculean effort to ingest. I found MSKTC in the wee hours of the night, surfing the web while I kept vigil at his bedside. There, I learned about disorders of consciousness and minimally conscious states. I realized this described Aidan's condition at the time. I learned about inpatient rehabilitation facilities that have treatments specifically designed for patients who are experiencing a disorder of consciousness. I found a facility that offered a minimally conscious program in a neighboring state. I advocated for him to go there, rather than being sent to a long-term acute care hospital or a nursing home. Nobody at the hospital he was in had even heard of such a program! Had it not been for MSKTC, I shudder to think where Aidan's recovery would be right now. I want to be an ambassador to help get this wonderful resource into the hands of other families that find themselves where we were. Having knowledge will provide families with invaluable tools to help them be advocates, providing their loved ones the best possible chance for the best possible outcome.
What does Brooke do as an ambassador?
Since Aidan's injury, I've become involved in state-level projects to improve the care of TBI patients and especially those experiencing disorders of consciousness. I've also recently begun exploring ways to utilize artificial intelligence/machine learning to help identify patients early in their hospital course who might benefit from disorders of consciousness rehabilitation.
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