PODCAST: Systems Science and the Complex Healthcare Journey of People with Aphasia
Finding Strength: The Spaulding Rehabilitation Podcast
This episode of Finding Strength honors National Aphasia Awareness Month by sharing a powerful personal story of stroke and aphasia. Guest speakers Paul and Yasmèn Guidoboni, along with speech-language pathologist Olivia Gampel, MS CCC-SLP, and systems science expert Dr. Carla Hendricks, PhD, CCC-SLP, explore the complex journey faced by people with aphasia, their care partners, and the clinicians who support them.
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PODCAST: Conversations on Severe Traumatic Brain Injury and Life-Sustaining Treatment
Finding Strength: The Spaulding Rehabilitation Podcast
This episode of Finding Strength explores the difficult decisions families face when a loved one experiences a severe traumatic brain injury (TBI), particularly regarding provision or withdrawal of life-sustaining treatment. Guest speakers Ms. Deb Jones, Dr. Theresa Williamson, MD, and Dr. Yelena Bodien, Ph.D., discuss the evolving science of prognosis in TBI, the impact of early decisions to withdraw life-sustaining treatment, and the need for improved patient-doctor communication in critical care settings.
| | 📱 LIBRE GO! App for Burn Survivors Featured in New Mobile Health Project | | |
The LIBRE Profile is a self-reported outcome measure of social participation for adults (18 years or older) with burn injury. The LIBRE GO! mobile app, developed by the Boston-Harvard Burn Injury Model System (BHBIMS). Further development and implementation of this innovative app is being supported by the federally funded project, “Advancing Collaborative Translation (ACT) for Mobile Health Apps to Support Health and Function of People with Disabilities,” in collaboration with the Shepherd Center.
This initiative—also featuring RENEW Scleroderma and SwapMyMood—aims to:
- Promote adoption and use of NIDILRR-funded innovations,
- Advance changes in practice and care delivery for people with disabilities, especially from underserved communities, and
- Deepen understanding of how to successfully translate and implement evidence-based tools in real-world settings.
The inclusion of LIBRE GO! highlights BHBIMS’s leadership in developing digital tools that empower burn survivors in their recovery and community reintegration. This project is being funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Disability and Rehabilitation Research Projects (DRRP) program.
📲 Download LIBRE GO!:
Apple Store | Google Play
| | 42nd Annual Symposium of the National Neurotrauma Society | | |
Research coordinator Ellyn Pier, MPH presented her poster titled "Whose Outcome is it Anyway? A Person-Centered Approach to Outcome After TBI." The project explored what outcomes after traumatic brain injury (TBI) are considered acceptable by people with TBI and their caregivers. Through a crowdsourcing survey, responses from 252 individuals with TBI and 256 caregivers were gathered. Results revealed that participants prioritized basic communication, like answering yes/no questions, as a minimally acceptable outcome. Interestingly, while most respondents valued partial independence, this contrasts with the traditional clinical view that only full independence is a favorable result. Our findings emphasize the need for more person-centered measures in TBI recovery and decision-making.
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Research coordinator Charlotte Luster, BA, presented findings from the LATE-TBI Lab on brain cancer mortality following traumatic brain injury (TBI). Results demonstrated that individuals in the TBI Model Systems died of brain cancer at a 1.75 times higher rate than the general population. Secondary analysis revealed that TBI etiology differed between decedents with and without brain cancer, with more TBIs from gunshot wounds among those who died of brain cancer. TBI, particularly from gunshot wounds, may increase brain cancer risk. These results support further investigation into the pathophysiology underlying the potential association between brain cancer and TBI.
| | A Moving Story on Disorders of Consciousness | | Dr. Joseph Giacino, PhD, project director for the Spaulding-Harvard Traumatic Brain Injury Model Systems at Spaulding Rehabilitation, was featured in The Atlantic article, "The Mother Who Never Stopped Believing Her Son Was Still There." The article chronicles the life of Ian Berg, who sustained a severe brain injury in 1986 following a car accident. Dr. Giacino has played a pivotal role in understanding disorders of consciousness in patients with severe brain injuries. Dr. Giacino’s clinical expertise helped clarify Ian Berg's diagnosis and establish that he retained conscious awareness. | | | Dr. Lewis E. Kazis, ScD, Research Director of the Rehabilitation Outcomes Center at Spaulding and Professor Emeritus at Boston University School of Public Health, received the prestigious 2025 John Ware and Alvin Tarlov Career Achievement Prize in Patient Reported Outcomes Measures. This international recognition honors Dr. Kazis' decades-long leadership and contributions to advancing the field of patient-reported outcomes. He will be formally presented with the award during a plenary session at ISQua’s 41st International Conference in São Paulo, Brazil. | | Dr. Jen Oshita, PhD, CCC-SLP, Post-Doctoral Fellow at NYU Langone Health and a Spaulding Rehabilitation LeaRRn scholar, has been awarded the National Institute on Disability and Independent Living and Rehabilitation Research Switzer Fellowship Grant. Her project is titled "What Gets Counted, Counts: Social Risk Factor Screening Among Adults with Disabilities". This project will examine the national prevalence of social risk factors among adults with disabilities and investigate why this population shows higher non-response rates to social risk screening questions compared to adults without disabilities. | | This summer we welcome four new members to the Spaulding Research Institute. | |
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Simon Driver, PhD joins Spaulding as Director of the Discovery Center for Brain Injury and Concussion Recovery. Dr. Driver brings a robust background in rehabilitation outcomes research, with a focus on health promotion for people with neurological disabilities. He was formerly the Project Director of the North Texas TBI Model System and Administrative Director of the Baylor Scott & White Spinal Cord Injury Model System. Outcomes of interest include cardiometabolic risk factors (e.g., weight, blood pressure, cholesterol) and patient reported measures (e.g., quality of life, self-efficacy). He recently completed two RCTs examining the efficacy of a modified Diabetes Prevention Program for people with stroke and TBI and found 5-8% weight loss, respectively. Current projects involve telehealth, mobile application, cultural modification, and implementation trials to reach broad groups of participants.
Recent examples of his work:
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Morgan O'Neil, PhD joins Spaulding as an Assistant Professor and Research Investigator whose primary research interest revolves around identifying and developing treatment approaches to improve outcomes for pediatric patients with concussion. She has a history of partnering with community partners to identify patient reported outcomes (e.g., time to return to sport and school, post-concussion symptoms, concussion knowledge) that reflect their needs and priorities. As part of her ongoing federally funded project she will partner with community partners to develop a post-concussion educational toolkit and implement the toolkit into clinical practice to determine feasibility, acceptability and appropriateness.
Recent examples of her work:
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Shanti Pinto, MD, MSCS joins Spaulding as a clinician-scientist with a research focus on autonomic nervous system dysfunction and cardiovascular health after traumatic brain injury (TBI). She joins us from UT Southwestern where she was Co-Principal Investigator of the North Texas TBI Model System. She is currently funded by the National Institutes of Health (NIH) to study cerebral autoregulation and autonomic nervous system dysfunction in the first year following TBI. She recently received funding from the National Institute on Disability Independent Living and Rehabilitation Research (NIDILRR) to study the association between depression and cardiovascular health following TBI.
Recent examples of her work:
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Chad Swank, PT, PhD joins Spaulding as an Associate Professor and Research Investigator from Baylor Scott & White, where his research focus has been on the clinical application of advanced rehabilitation technologies to improve mobility and function in people with neurologic dysfunction. In particular, he seeks to link clinical metrics (e.g., gait, upper limb function) with physiologic measures (e.g., cardiovascular, neuromuscular). Recently completed and ongoing RCTs leverage robotics and neuromodulation for people with spinal cord injury, traumatic brain injury, and stroke.
Recent examples of his work:
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The Joint Committee on Health Care Financing conducted a hybrid public hearing on July 1st, 2025 to solicit written and oral testimony on bills related to the Executive Office of Health and Human Services (EOHHS) and MassHealth II, focusing on children, enrollees with disabilities, and related services and providers. Dr. Chloe Slocum, MD MPH, of the SCI Model Systems gave oral testimony in support of House Bill 1412 and Senate Bill 903, otherwise known as An Act Improving Access to Post Acute Services.
“H.1412 and S.903 directs MassHealth to improve communication with enrollees about changes in coverage and coordination during the determination process that will help dissolve the current and formidable backlog of individuals awaiting post-acute care placement,” Slocum said. “By decreasing the bottleneck of patients awaiting post-acute care services, [the bills] will help provide meaningful access to these critically important services in a more efficient and equitable manner, giving others the chance to obtain the necessary care and skills that they need to return to the community and hopefully thrive, even in the context of complex and chronic medical conditions.”
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Boston Area Brain Injury Support Group (BABIS) Talks Research
On June 7, the Neurorehabilitation Lab (NRL) led by Dr. Joseph Giacino, PhD, visited the Boston Area Brain Injury Support group (BABIS) meeting to present their latest research findings and highlight current research participation opportunities for BABIS members. BABIS members and staff from the NRL had a lively discussion about research findings, research ethics, and the importance of including persons with lived experience in research.
BABIS meets the first Saturday of the month at Spaulding Rehabilitation Hospital from 10am-12pm, and is a space for brain injury survivors and their caregivers to share experiences, seek support, and learn about various brain injury-related topics (even yoga!).
If you're interested in learning more about BABIS, please contact Sally at mybabis2@gmail.com.
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Open for Proposals: BIA-MA Annual Conference
Brain Injury Association of Massachusetts
The Brain Injury Association of Massachusetts (BIA-MA) will hold its 44th Annual Brain Injury Conference on March 25 & 26, 2026. They are now accepting proposals for conference workshops and poster presentations.
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SCI Awareness Day at Fenway Park
SCIBoston
This SCIboston favorite is back! Please join us in raising awareness for spinal cord injury at the Red Sox vs. Miami Marlins game on August 17th at 1:35pm, for Spinal Cord Injury Awareness Day at Fenway Park! Tickets are on sale now and all attendees receive this year's official event hat!
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New England ADA Center
The Institute for Human Centered Design's New England ADA Center is one of the 10 regional ADA centers that make up the ADA National Network. Each center provides guidance, training, resources and research on the Americans with Disabilities Act to help people understand and use the law.
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New Resource: “Return to School After Burn Injury” Video Series
Model Systems Knowledge Translation Center
Helping children and teens confidently re-enter the classroom after a burn injury can be challenging—for both families and clinicians. That’s why the National MSKTC Burn Model Systems has released a powerful “Return to School After Burn Injury” video series, featuring real-life journeys and expert guidance. Whether you're a clinician, educator, family member, or peer support advocate, these evidence-based videos are a valuable resource to prepare for a successful school transition after a burn injury.
Highlights include:
- Insightful family and student stories that demonstrate resilience, coping strategies, and peer reintegration.
- Practical advice from Ben Madrid, an occupational therapist, on school accommodations, self‑advocacy, and adaptive planning
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Special Olympics and Nike Announce Three-Year Partnership
Special Olympics and Nike announced a three-year global partnership to further the longtime collaboration between the two global organizations to create access to sport for all youth. This new, global phase of the partnership elevates and expands upon Nike's more than two decades of support of Special Olympics Oregon, recent support of Special Olympics Berlin and grants to other local Programs.
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Resilience has been conceived as grit, flexibility, and perseverance. An essay published in the International Journal of Environmental Research and Public Health likens it to a rock that bears weight without reaction, a spring that bounces back from strain, or a dandelion that flourishes in harsh conditions despite its delicate appearance.
Resilience begins with how we see the world.
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From the filmmakers of "The Gene" and "Cancer: The Emperor of All Maladies," and Executive Produced by Bradley Cooper, "Caregiving" is a groundbreaking new documentary from Well Beings that personalizes America’s caregiving crisis. Featuring intimate stories and expert voices, the film highlights the struggles and triumphs of caregivers nationwide.
The two-hour documentary is centered on the personal experiences of caregivers providing for loved ones, and the challenges and triumph they face each day. As the number of caregivers declines, and the number of individuals requiring care in our country increases, the challenges grow. Caregivers require differing types and levels of support. At times, the burdens of caregiving can seem unbearable, regardless of resources. The “needs gap” for information may be greater for caregivers than it is for care recipients. The film will explore these issues and shine a light on innovation for 21st century caregiving. Narrated by Award-winning actress Uzo Aduba.
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Contact us at: srnoutcomescenter@partners.org
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