Empowering Communication: The perspective of English-speaking patients with ALS in Quebec on voice cloning technologies

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative motor neuron disease that often leads to the loss of speech, significantly affecting communication and quality of life. As speech deteriorates, persons with ALS (pALS) increasingly rely on augmentative and alternative communication (AAC) tools (e.g. text-to-speech apps). Traditional voice preservation methods require extensive recordings and may not fully capture the emotional expressiveness or identity of the speaker. Voice cloning – a technology using artificial intelligence – can replicate a person’s voice using only a short audio sample. It offers a faster, more accessible, and potentially more natural-sounding alternative.

This project aims to evaluate the perception of voice cloning technologies among Anglophone pALS in Quebec.

Through a mixed-methods approach involving interviews, questionnaires, and hands-on use of voice cloning tools, we will explore how pALS perceive the naturalness, expressiveness, and identity preservation of their synthetic voices created with voice cloning technology. We will also assess how factors such as the severity of speech impairments, recording length, and recording tasks influence their perception.

The findings will inform the development of clinical guidelines for speech-language pathologists and support shared decision-making between clinicians and patients. Ultimately, our research seeks to empower pALS to maintain their voice, identity, and social participation throughout the progression of their disease.

Outputs:

March 2026
Invited presentation, Les 1res Rencontres RésO-MAP (Paris). Presented project and strengthened collaboration with Hôpital Fondation A. de Rothschild.

December 2025
Poster, Allied Professionals Forum (International Alliance of ALS/MND Associations), Toronto.
Kheloufi, Y., & Bouvier, L.Empowering Communication: Evaluating Voice Cloning for Anglophone ALS Patients in Quebec.

Establishing partnership with ElevenLabs and Bridging Voice.

November 2025
Oral presentation, Communauté de pratique orthophonique en SLA/MMN du Québec (Montreal).
Kheloufi, Y.AI Voice Cloning in ALS.

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