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    • #16646
      Dagmar Munn
      Keymaster

      A few months ago, I learned about a study sponsored by the nonprofit group EverythingALS that aimed to create a high-quality database of speech data to develop enhanced voice recognition tools that improve quality of life for ALS patients – – plus add to research on ALS-related dysarthria. (a.k.a “ALS voice”)

      I wrote about it in: Adding My Voice to a Valuable Study

      I’ll admit I’m taking advantage of the study to add to my weekly practice of speaking out loud. These sessions are helping me learn to better manage and hopefully save what little voice I have. But I’m also happy to contribute my “ALS voice” to help AI software learn to better understand me and my fellow pALS.

      EverthingALS is still recruiting for the next phase of their study. If you’d like to participate, find out more here.

      Do you have a problem with AI or voice-activated devices understanding you? What are your workarounds? Would you consider joining this voice study?

    • #16649
      Christine Moretti
      Participant

      Fortunately, I am one of the lucky patients to be enrolled in this new speech study for EverythingALS. It’s easy to do once (or more if you choose) a week. You’re taken through a series of screens and while being asked to repeat and read as prompted. At the end of the video, you will be asked to complete an ALS-FRS, ROADS, or similar type health/functionality questions. It’s for pALS, all MND patients, as well as healthy volunteers. It probably take me less than 10 minutes for each session.  It truly makes me so happy to participate in ALS research and give back to the community.

    • #16650
      Marianne Opilla
      Participant

      My husband and I are also enrolled.  He is a non-ALS “control” subject.  My speech is worse in the evening so I alternate each week recording AM and PM speech.  I agree, it is very easy and quick.

    • #16651
      Christine Moretti
      Participant

      Marianne, that’s a good idea to alternate AM and PM recording. Thanks. Good luck to you.

    • #16655
      Dagmar Munn
      Keymaster

      Christine & Marianne – – wow, it’s so good to learn you both are in the study too! I’ve found that taking directions from their AI “Nina” is sooo easy. (her voice reminds me of my kindly 3rd-grade teacher 🙂 )

      And Christine, your husband’s participation reminded me of another thing: they (the study) is open to, and needs all types of voices. Not just pALS. So, I encourage our members plus their caregivers to enroll.

      Help us expand research into ALS-dysarthria 🙂

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