Our research focuses on augmentative and alternative communication technology use by persons with amyotrophic lateral sclerosis (ALS or Lou Gehrig's Disease). Our latest study will learn about the communication methods used by people with ALS, how people with ALS learn about their options for communication, and how people with ALS participate in various communication situations. The information gathered for this study will be used to help improve the communication options and communication support services available to people with ALS. We want to hear from all people with ALS, regardless of whether they have experienced speech changes, or what methods they use for communication. To learn more about the study, please view our introductory video.
This one-time survey will take approximately 30-60 minutes. You may complete the survey online, or you may request a paper survey. You may have another person enter your answers if you have difficulty using the computer or writing. Your responses will be kept anonymous. To take the survey or learn more about the study, please contact Betts Peters at firstname.lastname@example.org or 503-494-2732.
For more information on Amyotrophic Lateral Sclerosis, please contact Betts Peters, M.A., CCC-SLP
Our research on amyotrophic lateral sclerosis
Here you will find short descriptions of the grants we have worked on regarding Amyotrophic Lateral Sclerosis.
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.
- 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.
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. (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.