Watch: Moment Woman With ALS Recovers Voice With AI
Newsweek AI is in beta. Translations may contain inaccuracies—please refer to the original content.
Debbie Lopez lost her voice to a muscle-weakening disease, but with the help of new artificial intelligence (AI) technology, she is speaking to her family again, Monroe Community Hospital (MCH) in Rochester, New York, confirmed to Newsweek.
Why It Matters
Lopez, who has been a patient at MCH since February, was diagnosed with ALS (amyotrophic lateral sclerosis) in 2019. ALS is a disease that affects the nerve cells in the body, causing the muscles to become weak and can lead to paralysis and loss of voice.
No singular cause has been identified for most causes of ALS, with some research into factors that may be linked, such as heredity, environmental exposures, and diet, among others.
About 30,000 people in the United States are living with ALS, according to estimates from the Centers for Disease Control and Prevention, which notes that tracking the disease can be challenging.
AI technology is rapidly transforming society, reshaping jobs, productivity and advancements across sectors, including medicine.
What to Know
Several years ago, Lopez, 39, started a YouTube channel, Living with Lemons, to document her health journey, raise awareness, and provide comfort to others going through a similar experience.
The channel has ended up being able to give Lopez her voice back, as speech pathologist Jaime Spencer, who provides care to Lopez at MCH explained, "We were able to get her voice from using her YouTube channel," adding, "and from there they were able to clone anything that she wants to say."
The AI voice, which mirrors Lopez's, can now mimic anything Lopez types, thanks to the content from her YouTube videos and the technology's ability to replicate speech.
MCH shared with Newsweek a video of Lopez breaking into a smile as she hears her voice from the device, saying in what sounds just like her, "Hi, I am Debbie Lopez."
A screen grab of a Monroe Community Hospital video showing Debbie Lopez, a patient with ALS, hearing her voice from AI.
A screen grab of a Monroe Community Hospital video showing Debbie Lopez, a patient with ALS, hearing her voice from AI.
Monroe Community Hospital
Lopez uses an Eyegaze device to control what the AI says, allowing her to direct and select items with her eyes, send messages and surf the web, among other features.
"Cameras on the device track her eye movements and she can look at different parts of her monitor for either letters, words, or popular phrases or presets she has on her communications device," an MCH spokesperson told Newsweek in an email Wednesday.
In the MCH video explaining Lopez's health journey and the use of the AI, Spencer said, "This new software and this new technology has been amazing because it allows patients and individuals to preserve some of the most intimate parts of them and what makes you you, is your voice."
Lopez, through the AI, says in the video, "Even if I can't make a sound, I still have a voice."
Lopez and her team at MCH are working on preserving her voice for her three children and family members by reading and recording some of her favorite children's books.
What Happens Next
Lopez remains in high spirits despite the severity of her disease, saying, "It's broken everyone who loves me and everyone I love, but it hasn't broken me," and adding, "I get to see the best in everyone."
AI is increasingly being used in medical settings, from diagnostics and predictive analytics to assisted surgeries and the development of new treatments.
"ALS can be pretty isolating. Patients lose function of much of their body parts. Anything that helps restore a sense of normalcy is a huge benefit," a MCH spokesperson told Newsweek.
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Multiple trial participants testified, submitted Public Comments and shared their RWE, which aligns with the type of efficacy evidence specified in the ALS Guidance Document and 21st Century the time of the advisory committee meeting in 2023, many trial participants reported tangible improvements in how they felt and functioned, and hence, an improved quality of life. (See sections H & I, pgs. 91-127). Their testimony was supported by video evidence documenting those improvements and by the opinions from multiple treating neurologists outside the clinical trial. For example, neuromuscular specialist Dr. Danielle Geraldi-Samara submitted a Public Comment to the FDA about what she observed in many of her patients participating in the NurOwn Phase 3 trial and EAP: "The real world evidence could not be more striking. I have known patients nearly immobile who gained some functionality in their gait, patients with severe dysarthria become intelligible, patients who could not manage the fine motor skill needed to button or zipper, finally able to dress independently. I have patients with solid plateaus [in ALSFRS-R scores] over the course of a year." Her clinical observations of progression-free survival after the NurOwn trial mirror those of Dr. Windebank and the other investigators during the trial and EAP. Now that the Phase 3 trial has been unblinded, multiple trial participants have confirmation that NurOwn halted their lethal progression and helped some people regain function. Our lived patient experiences now have both validation and vindication. When people are becoming paralyzed, it's common sense that we know when a therapy helps us function. Our lived patient experiences aren't anecdotal hyperbole; they are evidence. And as Commissioner Makary recently said at the Gene and Cell Therapy Forum, there is value in learning from "n of 1" cases. Combined, the EAP "n of 10" and the right to try "n of 1" illustrate compelling and consistent, dose-dependent evidence of efficacy. Reinforcing the efficacy data, Navy pilot Matt Bellina shared the RWE and RWD contained in his VA medical records in hisblog and onsocial media. Matt too experienced unprecedented clinically meaningful improvements after receiving 7 doses of NurOwn via Right to Try. Although he was a slow progressor, diagnosed in 2011, Matt's ALS had progressed significantly. He was choking on food, using NIV to breathe at night; had little use of his hands; and could not stand without assistance. His data are informative, supporting evidence of efficacy because he is the only person in the US who received 6 consecutive doses; because he was the only "slow progressor" to receive NurOwn; and because his baseline score was 21/48 on the ALS Functional rating scale. Matt's large magnitude, dose-dependent improvement in function was immediate and obvious. (See section J at pgs 128-133). Matt has video documenting him standing out of a wheelchair unassisted - the first time in two years. He stopped choking on food. He improved his functional score by 6 points. His FVC stabilized and he stopped using NIV to breathe for more than 4 years. NurOwn interrupted Matt's lethal trajectory to death. Commissioner Makary has repeatedly offered that the FDA, under President Trump, "believes in both the spirit and the letter of right to try." Thus, Petitioners hope that this FDA will consider and believe the RWE from the very veteran for whom President Trump's Right to Try law was named. Totality of Evidence Methodology for Rare Diseases To determine if a therapy can meet the approval threshold of "substantial evidence," the FDA asks if a therapy improves how people "feel, function or survive." Regulators look principally at the trial's primary endpoint at one fixed point in time at the end of the trial. But in heterogeneous rare diseases with small populations and short placebo-controlled trials, efficacy signals can be missed. Hence, it's much more likely to result in a Type II statistical error: delaying or denying approval of a drug that does work. In a terminal disease like ALS, Type II errors cause ongoing paralysis and death. Thus, the Citizens' Petition reasserts the propriety of the FDA's use of the "totality of evidence" statistical methodology to assess NurOwn's efficacy. This approach - widely accepted in oncology for evaluating therapies in heterogeneous, rare populations - strengthens the case for NurOwn's approval by highlighting the consistent benefits in the subgroup of ALS patients earlier in ALS progression (akin to a drug working on stage I and II cancer patients). When including the trial population with the most advanced ALS (akin to stage III/IV cancer), the trial did not meet its endpoints. But when looking at the patients earlier in ALS progression, NurOwn met statistical significance. Using the "totality of the evidence" methodology, renowned biostatistician and Wilkes Award winner, Dr. Lee-Jen Wei of Harvard / Dana Farber analyzed the multiple trial endpoints, across multiple functional scale domains, at multiple time points throughout the 28-week trial. He testified at the Advisory Committee meeting that these p-values were: 0.045, 0.021, 0.007 and 0.005; thus providing more supporting evidence of NurOwn's efficacy. Meeting FDA Approval Thresholds The Citizens' Petition asserts that NurOwn achieves the statutory thresholds for multiple FDA approval pathways: 1. Traditional ApprovalNurOwn's survival data, including the five-year survival, TFS, PFS and OS, meet the "substantial evidence" threshold of one well-controlled trial plus supporting evidence. This conclusion aligns with the FDA's recognition that survival data are the gold standard in FDA approvals. Thus the diversity and magnitude of NurOwn's survival outcomes fulfills both the "quality" and "quantity" requirements of "substantial evidence." (See Emergent Fact section C, pgs. 19-33). 2. Accelerated ApprovalNurOwn meets the "reasonable likelihood" threshold for accelerated approval. The survival data from the "n of 10" EAP are "reasonably likely to predict" a favorable impact on irreversible mortality of the 32,000 people with ALS. This survival data far surpasses survival data supporting the accelerated approval of many cancer therapies. (See comparison at Memorandum section I, pgs. 191-209 and Exs. A & B). NurOwn's respiratory data, including delays in time-to-tracheostomy, time-to-NIV, and improved FVC, are also reasonably likely to predict a favorable impact on mortality. (See Emergent Fact section D, pgs. 34-43 and Memorandum II.C pgs. 219-222). NurOwn's CSF biomarker data are also reasonably likely to predict a "clinically meaningful" effect. NurOwn caused statistically significant changes in first-in-class CSF biomarkers - regardless of disease severity and only in the NurOwn treatment arm. Of the 45 pre-specified biomarkers tested, 23 had statistically significant changes and 15/23 had p-values ≤0.001. These CSF biomarkers provide objective biological evidence of target engagement across pathways of neuroinflammation, neurodegeneration, and neuroprotection. (See Petition Facts section M, pgs. 156-166 and Memorandum section II.C pgs. 219-222). Additionally, Brainstorm Cell has shared neurofilament light biomarker data in a poster presentation at the 2024 NEALS conference. As the FDA has acknowledged, as ALS progression advances, harmful NfL increases, reflecting more diseased and dying motor neurons. At the end of the Phase 3 trial, there was a 9.4% delta between the NurOwn and placebo arm (p=.037). But in those 10 from EAP who were earlier in progression at the start of the Phase 3 trial, the delta between the NurOwn and placebo arms was more apparent. At the end of Phase 3, the 4/10 on placebo had a 37% increase in harmful NfL whereas the 6/10 on NurOwn had a 4% decrease in NfL. With the additional dosing in EAP, the 4/10 in the placebo-crossover group finally experienced a 5% decline in harmful NfL, whereas people on NurOwn maintained a 36% decrease from baseline. Not surprisingly, those who received the most doses of NurOwn and received it earliest in ALS progression had the largest magnitude functional changes and as well as the largest decrease in NfL levels - with two people who received 9 total doses having a decrease of ≥60% in harmful NfL levels. (See table in section II.C.2.a on page 222). As such, the changes in CSF biomarkers are reasonably likely to predict a clinically meaningful benefit, and thus, the third way that NurOwn can meet the threshold for accelerated approval. 3. Conditional ApprovalNurOwn aligns with Commissioner Makary's proposed "plausible mechanism of action" threshold for conditional approval. Both stem cell technology and neurotrophic factors are plausible mechanisms of action in ALS; and NurOwn's CSF biomarker data confirms biological plausibility. (See Petition Fact section N, pgs. 173-176 and Memorandum section II.G at pgs. 234-241). A Call for De Novo Review and Expedited Action The Citizens' Petition requests a de novo review by the FDA. The Center for Biologics Evaluation and Research (CBER) has not ever considered the EAP survival, respiratory, or biomarker data, nor has it considered the Right to Try data from Navy pilot Matt Bellina, nor the unblinded and now corroborated RWE/RWD from people who have benefitted from NurOwn since 2011. The Petitioners also request that CBER use the Commissioner's new Priority Voucher to expedite review. The Citizens' Petition also proposes that FDA consider the far-reaching benefits of a Phase 4 post-marketing study, including a biorepository and natural history/exposome database, which aligns with the FDA Priorities outlined by Doctors Makary and Prasad. A Historic Moment for the ALS Community At the recent 2025 Gene and Cell Therapy Forum, Secretary Kennedy shared that the FDA will do everything it can to "accelerate approvals for rare diseases." And in their Joint OpEd for JAMA Viewpoints, Commissioner Makary and Director Prasad said the FDA is committed to "rapidly usher to market new products with transformational potential." In furtherance of that commitment, Director Prasad told the rare disease community that the FDA will: "approve anything that is an incremental advancement"accelerate therapies by "taking action at the first sign of promise for rare diseases" and at the "earliest sign of statistical evidence"monitor people post-market to "ensure people live longer, stronger." The Citizens' Petition argues that NurOwn has more than transformational potential. Rather, the survival and respiratory data, along with 8 years of RWE, demonstrate its already transformational impact on people living with ALS. Thus, the ALS community calls on the FDA to approve NurOwn, honoring its commitment to marry "gold standard science and common sense." ALS is stealing decades from our lifespans. Just as the FDA acts with urgency for people with terminal cancer, the Citizens' Petition asks the FDA to act with the same urgency as ALS is killing our motor neurons. Please don't let another generation of people with ALS die waiting when we know a stem cell therapy can help us live. About ALSALS is a 100% fatal, heterogeneous, rare neurodegenerative disease. As motor neurons die, the brain can no longer communicate with the voluntary muscles, which slowly become paralyzed. For reasons researchers don't fully understand, ALS impacts only the motor neurons, not the sensory neurons. Thus, people with ALS still feel cramping, sensations, fasciculations and pain, but they can't move to respond to them. Ultimately, people lose the ability to walk, talk, move, eat, drink, swallow, and eventually, breathe. About the Petitioners The Petitioners are a coalition of people who received NurOwn and others with ALS who could not. We are committed to advancing research, treatment access, and policy changes for ALS. Petitioners: Nicholas Warack, Klingenberg - Phase 3 & EAPEric Stevens - Phase 3 & EAPJoshua Smith - Phase 3 & EAPEstate of Roberto Muggli - Phase 3 & EAPLesley Krummel - Phase 3Estate of Kade Simons - Phase 3Estate of Justin Rogers - Phase 3Terri Pickering Saenz - Phase 2Tara CollazoMayuri SaxenaEstate of Jamie Rose BerryEstate of Patricia ManhardtShahriar Minokadeh, MD Contact: Nicholas Warack, Esq.(mail to: Veterans4NurOwn@ Klingenberg(mail to: NurOwnWorks@ SOURCE: NurOwn Citizen's Petition
