AAC and people who have ALS (Research project)

Godfrey Nazareth

Godfrey Nazareth

UPDATE: October 25, 2016. Thank you for the overwhelming response to this request for participation. Over 20 persons with ALS who use AAC have contributed their experiences to this project, and we look forward to sharing the findings soon. 

We are interested in learning more about the experiences of people who have amyotrophic lateral sclerosis (ALS) and who use AAC to communicate.

Our research team includes Godfrey Nazareth (a person with ALS who works at Children’s Hospital of Philadelphia), Felicia Giambalvo ( a graduate student at Penn State), Kim Kohler ( a person with a family member who had ALS), and David McNaughton and Jess Gosnell Carron (faculty at Penn State).

We will use an on-line survey and follow-up email  to gather information from persons with ALS on their use of AAC to support communication. Our goal is to identify information that can be used to improve service delivery and AAC technology development for persons with ALS.

We would like to speak with persons with ALS that have made use of speech generating AAC devices. This could include laptops and tablets with specialized software that provides  speech output. For the purposes of this study, we are especially interested in speaking with persons who selected their AAC system in conjunction with a speech language pathologist.

If you use an AAC devices, please consider participating in this study. AAC devices include

  • Dedicated AAC devices (i.e. Lightwriter, Dynavox, Tobii, DynaWrite)
  • Specialized AAC apps or programs on laptops or tablets (i.e. EZ Keys, Proloquo2Go on an iPad or Laptop)

Additional Inclusion Criteria:

  • Have a diagnosis of amyotrophic lateral sclerosis
  • Are between the ages 21-75
  • Have functional fluency in reading and writing in English
  • Have functional vision to allow participation in internet based surveys
  • Have access to the internet
  • Have complex communication needs (whereby their speech is inadequate to meet their daily communication needs and alternative methods are used)
  • Make use of speech generative augmentative and alternative communication
  • Are willing to participate in an internet based survey and follow-up email exchange
  • For the purposes of this study, we are focusing on individuals who received their AAC services in the United States.

This study will take approximately 2 hours of your time. Your participation can be divided across multiple days if you prefer. We are able to provide an honorarium of $60 for participation. This project is funded by the RERC on AAC.

Please email Felicia Giambalvo at psuAACresearch1@gmail.com for more information.

(This project has completed its recruitment activities) 

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