A SUPER-powered WP Engine Atlas Test Site

Joe&#039;s Atlas Experimentation Site

“It was easy, fun, and I’d do it all over again.” I know those are not the typical words used by someone who just finished participating in a research study, especially one focused on <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. But that’s exactly how I felt last week when I pressed the submit button on my final voice recording for <a href="https://saa.beckman.illinois.edu/">the Speech Accessibility Project</a>.
Readers of <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">this column</a> will know that, because I have ALS, one of my quests is to prevent my <a href="https://alsnewstoday.com/speech-problems/">ALS-related dysarthria</a> from robbing me of my ability to speak. <a href="https://alsnewstoday.com/columns/can-automated-technology-including-ai-help-with-als/">My other quest</a> has been <a href="https://alsnewstoday.com/columns/voice-recognition-study-ai-advancements-speech/">to support efforts</a> to improve how voice-activated devices respond to voices like mine.
Dysarthria feels like having a bad case of laryngitis and a lazy tongue that&#8217;s two steps behind what my mind wants to say. When I speak with family members and friends, they allow me the extra time it takes for me to pronounce multisyllable words or long sentences. But voice-activated devices have no such patience. I’m cut off midword, and the device searches for what it thought I said. For example, if I ask for &#8220;the best restaurants in Tucson, Arizona,&#8221; I often end up with instructions on how to get &#8220;the best rest.&#8221;
I’m sure my fellow sufferers of dysarthria can share much funnier stories than mine about their interactions with voice activation.
[recommended-reading id=82022]
The devices, however, are not to blame, and software designers don’t set out to build systems that ignore certain demographic groups or voice variations. The shortcomings result from how many and what types of voices were used to &#8220;train&#8221; the software. Giving it additional samples of irregular speech helps it recognize and better understand what a wider range of voices is saying.
That’s why when I first read about the Speech Accessibility Project in an <a href="https://alsnewstoday.com/news/university-illinois-speech-project-recruit-als-patients/">ALS News Today article</a>, I said, “Count me in.”
<h3>What happened next</h3>
I began by meeting online with the project’s speech-language pathologist, so she could assess my speech and explain how I&#8217;d make the online recordings. We reviewed the consent form, and she addressed my questions. I learned that I had three months to complete my recordings, but I could go at my own pace, stopping and starting again at the point where I&#8217;d left off.
Once I began doing my recordings, I discovered the sessions were set up as if I were playing an online game, complete with a congratulatory message each time I finished a designated level. The levels varied from containing typical single-word commands such as &#8220;stop,&#8221; &#8220;listen,&#8221; or &#8220;pause&#8221; to phrases like “What’s the temperature in Cincinnati, Ohio?” (I had to take in a big breath of air for that one!)
The Speech Accessibility Project still needs voice recordings from people besides those with ALS. People with other neurological conditions, such as <a href="https://parkinsonsnewstoday.com/">Parkinson’s disease</a>, Down syndrome, stroke, aphasia, and cerebral palsy are invited to apply. If you’re interested in participating, just follow the link above.
Let’s help technology learn more about ALS. If computers learn how to understand us better, I believe we can continue to live well while <a href="https://alsnewstoday.com/living-with-als/">living with ALS</a>.
<hr />
DAN Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Using my speech issues to improve voice recognition software

A Phase 1b proof-of-concept clinical trial of the experimental oral therapy VRG50635 in people with <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS) is expected to launch in the coming months, according to the therapy&#8217;s developer, <a href="https://www.vergegenomics.com/" rel="nofollow">Verge Genomics</a>.
Verge also announced that the upcoming trial will use <a href="https://modality.ai/" rel="nofollow">Modality.AI</a>, a computer-based tool that performs automated assessments of language and speech patterns.
“Gradually deteriorating vocal communication is one of the major issues many people with ALS experience. It is, therefore, crucial for us to capture objective data to quantify changes in speech during therapeutic trials and explore how this data can be used to better understand the potential benefits of VRG50635,” Diego Cadavid, MD, Verge&#8217;s chief medical officer, said in a <a href="https://www.globenewswire.com/news-release/2023/11/29/2787605/0/en/Verge-Genomics-Will-Use-Modality-AI-in-Its-ALS-Phase-1b-Clinical-Trial-of-Its-Lead-Drug-Candidate-VRG50635.html">company press release</a>.
[recommended-reading id=88361]
<h3>ALS weakens muscles of mouth and throat, affecting speech</h3>
Clinical trials are the gold standard for testing <a href="https://alsnewstoday.com/experimental-treatments-for-als/">potential disease treatments</a>. One of the most important aspects to consider when designing these studies is determining their endpoints — that is, what measurements will be used to determine whether or not the experimental treatment is working.
&#8220;Endpoints used in ALS trials are often subjective, biased, and only limited objective biomarkers of neurological function are available,&#8221; said Anil Tarachandani, PhD, vice president and head of translational medicine at Verge.
ALS is characterized by the progressive death and dysfunction of motor neurons, the nerve cells that control voluntary movements. Degeneration of motor neurons impairs communication with muscles, leading to muscle weakness and atrophy (shrinkage). When muscles in the mouth and throat are affected, patients typically experience <a href="https://alsnewstoday.com/symptoms-of-als/#Speech_problems">problems with speech</a>, among the common <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms of ALS</a>.
Modality.AI uses a multimodal platform where a computer analyzes what patients say and how they say it. The platform doesn&#8217;t require a doctor or specialized equipment; it can be done using home devices like smartphones and laptops.
To analyze vocal recordings, Modality.AI uses machine learning, a branch of artificial intelligence, in which a computer is given a set of mathematical rules, called algorithms, alongside a heap of data. The computer uses the algorithms to &#8220;learn&#8221; from these data by detecting patterns, and patterns then be can applied to build models that help in understanding new data.
&#8220;There are several publications already on the ability of Modality’s platform to measure vocal communication in ALS. Using speech as an objective endpoint in ALS trials can provide evidence of the efficacy of potential therapeutic interventions, such as VRG50635,&#8221; Tarachandani said.
The platform &#8220;has been extensively used by the broader ALS community and can provide insights into ALS disease progression,&#8221; he added.
<h3>Trial in healthy adults supports VRG50635 tolerability and safety</h3>
VRG50635 is designed to block the activity of a protein called PIKfyve, which Verge identified as a <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6112156/">potential treatment target in ALS</a> using a machine learning analysis of biological data.
“At the core of both Verge Genomics and Modality.AI is the use of machine learning in combination with proprietary data sets to optimize drug development,” said David Suendermann-Oeft, PhD, founder and CEO of Modality.AI.
&#8220;While the Verge platform is designed to predict new drugs with a higher probability of clinical success, Modality.AI’s multimodal platform reduces inefficiencies in clinical trials of these new drugs, increasing the success probability … by delivering more accurate and comprehensive insights into how these drugs may benefit people with ALS,&#8221; he added.
Verge reported top-line data from a <a href="https://www.isrctn.com/ISRCTN14792372">Phase 1 trial (ISRCTN14792372)</a> of VRG50635 in healthy adults earlier this year. Results showed that the experimental <a href="https://alsnewstoday.com/news/potential-oral-therapy-vrg50635-found-safe-healthy-adults/">treatment was generally well tolerated</a> at varying doses and may be given once daily.
In addition to working with Modality.AI, Verge previously <a href="https://www.businesswire.com/news/home/20230523005354/en/Verge-Genomics-to-Incorporate-Emerald-Digital-Health-Technology-into-its-ALS-Phase-1b-Proof-of-Concept-Clinical-Trial" rel="nofollow">announced a collaboration</a> with <a href="https://emeraldinno.com/" rel="nofollow">Emerald Innovations</a> for the upcoming trial of VRG50635 in ALS patients.
Under this earlier collaboration, the trial will incorporate digital sensors made by Emerald in study participants&#8217; homes, allowing continuous monitoring of breathing, sleeping, walking, and other aspects of daily life that are impacted by ALS.

Changes in speech with ALS to be monitored in planned Phase 1b trial

For a while now, I’ve been keeping tabs on the new technologies of virtual assistants, voice activation, and artificial intelligence (AI), especially its potential benefits for the <a href="https://alsnewstoday.com/what-is-als/">ALS</a> community. Some of it I’ve tried, with iffy results. Others, like AI, are on my wish list to help erase ALS altogether.
Here’s a quick look at what I’ve been doing.
The introduction of voice activation and virtual assistants happened a few years before I began experiencing my ALS-related voice issues in 2017. At that time, I read that the software would quickly learn its owner&#8217;s voice inflections, especially those who speak English with a heavy foreign accent. So figuring mine was just an “ALS accent,” I held high hopes that our new Echo Show and Alexa devices would help me.
But no amount of repetition, variation in tone, or cajoling on my part would activate the devices. Or if they did hear me, their responses left me feeling I was a contestant in an online comedy game show. Eventually, I gave up trying and used the text-to-talk app on my cellphone, to direct its automated voice to speak to my devices.
[recommended-reading id=85657]
On the positive side, being rejected by technology motivated me to begin a quest <a href="https://alsnewstoday.com/columns/pronunciation-drills-esl-students-help-improve-my-als-speech/">to improve my pronunciation</a> and speaking skills. I even bought a <a href="https://alsnewstoday.com/columns/microphone-voice-hear/">personal microphone</a> to increase the volume of my voice.
Now, several years later, our Echo Show and Alexa still don’t recognize my voice, but the humans around me do. I&#8217;m actually grateful for the push to be mindful of my speech, breathing, and pacing of words.
<h3>Smart homes</h3>
While I know they exist, my husband and I haven’t yet ventured into the world of smart home appliances. That&#8217;s mostly because they were initially only activated by voice, and well, that&#8217;s not a good match for me.
Now, options exist to connect a smart home’s devices to each other and control them via a smartphone or tablet, but we’ll still pass — although I’ve read many positive accounts from other ALS patients who live with smart home technology.
<h3>AI, oh my!</h3>
Artificial intelligence is the wave of the future and will soon become dominant in our lives. I applaud its ability to gather data quickly, analyze them, and produce an answer. This we need for ongoing <a href="https://alsnewstoday.com/news/identifying-early-signs-als-may-be-aided-by-pisons-ai-powered-technology/">ALS research, diagnosis</a>, and, ultimately, to discover a cure.
But I’m on the fence about other applications of AI. For example, I don’t think it could <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">write this column</a>, capturing the experience of <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a> or sharing motivational strategies.
Technology can provide valuable assistance to those of us living with physical disabilities. But we need to remain cautiously optimistic about those future possibilities.
Right now, we have one another. Right now, we&#8217;re the best option to help one another learn to live well with ALS.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Tag: als speech

Using my speech issues to improve voice recognition software

Changes in speech with ALS to be monitored in planned Phase 1b trial

Can automated technology — including AI — help with ALS?