Here you will find short descriptions of the grants we have worked on regarding Amyotrophic Lateral Sclerosis.

• AAC Technology Management by Informal Caregivers

Writing papers about our work is an important part of the research process. The papers you will find here have been included in conference proceedings and peer-reviewed journals.

• Klein, E., Kinsella, M., Stevens, I., & Fried-Oken, M. (2022). Ethical issues raised by incorporating personalized language models into brain-computer interface communication technologies: a qualitative study of individuals with neurological disease. Disability and Rehabilitation: Assistive Technology, 1-11.
• Peters, B., O’Brien, K., & Fried-Oken, M. (2022). A recent survey of augmentative and alternative communication use and service delivery experiences of people with amyotrophic lateral sclerosis in the United States. Disability and Rehabilitation: Assistive Technology, 1-14.
• McLaughlin, D., Peters, B., McInturf, K., Eddy, B., Kinsella, M., Mooney, A., Deibert, T., Montgomery, K. and Fried-Oken, M. (2021). Decision-making for access to AAC technologies in late stage ALS. In B. T. Ogletree (Ed.), AAC Challenges and Solutions:  Improving Everyday Service Delivery. (pp. 169-199). Plural Publishing.
• Fried-Oken, M., Kinsella, M., Peters, B., Eddy, B., Wajokeowski, B. (2020). Human visual skills for brain-computer interface use: A tutorial. Disability and Rehabilitation: Assistive Technology.  15:7, 799-809. DOI:10.1080/17483107.2020.1754929.
• Peters, B., Bedrick, S., Dudy, S., Higger, M., Kinsella, M., Mclaughlin, D., Erdogmus, D. & Fried-Oken, M.. (2020). SSVEP BCI and eye tracking use by individuals with late-stage ALS and visual impairments. Frontiers in Human Neuroscience, 14, 457.
• Fried-Oken, M., Mooney, A., &Peters, B. (2015). Supporting communication for patients with neurodegenerative disease. Neurorehabilitation. 37(1), 69-87.

• Ball, L.J., Fager, S., &Fried-Oken, M. (2012). Augmentative and alternative communication for people with progressive neurological disease. Physical Medicine &Rehabilitation Clinics of North America, 23(3), 689-699. PMC #22938882.

• Gibbons, C., &Beneteau, E. (2010). Functional performance using eye control and single switch scanning by people with ALS. SIG 12 Perspectives on Augmentative and Alternative Communication, 19(3), 64-69.

• Fried-Oken, M., Fox, L., Rau, M.T., Tullman, J., Lou, J.S. (2006). Purposes of AAC device use for persons with ALS as reported by caregivers. Augmentative and Alternative Communication, 22(3), 209-221.

• Fried-Oken, M. &Bardach, L. (2005) Augmentative communication and end-of-life. Perspectives on Augmentative and Alternative Communication. 14(4), 3-9.

Every year we give presentations about the work we are doing. We have a diverse team who present on different aspects of the study.

• Peters, B. (2022) Communication Systems, and Communication Within Systems, for People with Amyotrophic Lateral Sclerosis. Online presentation hosted by Portland State University System Science Seminar Series.
• Peters, B. (2020) SSVEP BCI and eye tracking use by individuals with advanced ALS and visual impairments. Online presentation hosted by the National Center for Adaptive Neurotechnologies.
• ALS, AAC Technology, and Caregivers: Attitudes, Skills, and Role Strain, ASHA, 2004
• Caregiving and AAC Systems in ALS: Quantitative and Qualitative Analyses, ISAAC, Natal, Brazil, October, 2004
• ALS Severity and Caregivers' Reports of Communication with AAC Technology, 2004

Here you will find articles and other writings from community members with ALS who are participating in our research. You will also find newsletters featuring our research.