Windows software and Android app for ALS management

People with ALS or their caregivers can use Goopatient to track the progression of the disease to better collaborate with their doctors. In the health diary you can record symptoms such as muscle weakness, twitching, difficulty swallowing and speech changes, potential triggers, such as activities or stressors. Tracking medication intake, including muscle relaxants and symptomatic therapy, is essential to ensure adherence to the prescribed treatment plan. Also its advised to record lab results, such as electromyography (EMG) or blood tests - this can help doctors to assess disease progression and adjust treatment.

You can also add to your health journal encourading news about advances in the als management. Here are some of them:

Sam Altman launches startup Merge Labs to compete with Neuralink.



OpenAI CEO Sam Altman, together with renowned biomolecular engineer Mikhail Shapiro, in 2025 launched the startup Merge Labs, which will focus on developing non-invasive ways to interact with the brain using ultrasound and gene therapy. Shapiro has his own lab at Caltech, known for its work in non-invasive neuroimaging and neurocontrol methods, which use ultrasound rather than surgical implants to interact with the brain. This approach differs from Elon Musk's Neuralink strategy, which relies on implanting electrodes into the brain. Gene therapy allows cells to be "marked" so they can be visualized and controlled using ultrasound. Altman has long expressed skepticism about Neuralink implants. Back in August, he stated, "I definitely wouldn't stitch something to my brain," adding that he dreams of a future where all you have to do is think, and ChatGPT will respond.

ALS pill enters phase II human trials



Biopharmaceutical company Spinogenix in 2024 received FDA approval for human clinical trials of its drug SPG302 after promising safety results. The drug, taken as a daily pill, helps restore connections between neurons, literally regenerating synapses. It previously received preclinical support from the US National Institutes of Health (NIH) and the Department of Defense (DoD). Current treatments are inadequately addressing the needs of ALS patients, as slowing disease progression alone is not enough. If SPG302 proves effective in the next round of clinical trials, it will be a game-changer for ALS treatment.

Gene therapy slows the progression of amyotrophic lateral sclerosis



Scientists from the University of California, San Diego (led by Brian Head) have discovered that increasing the expression of the neuroprotective protein Caveolin-1 improves motor function and increases survival in mice with amyotrophic lateral sclerosis (ALS). In their new study, they used an adeno-associated viral vector to deliver synapsin-Caveolin-1 cDNA (AAV-SynCav1) to the spinal cords of rodents. This approach protected spinal cord motor neurons typically damaged by the disease, slowed its progression, and extended lifespan. The mice also showed increased physical strength and mobility during treatment. It is noteworthy that SynCav1 gene therapy was previously tested in mouse models of Alzheimer's disease, and the treatment prevented memory loss and learning disabilities even after a single administration of the drug.

Amylyx's neuroprotectant shows promising results in slowing ALS



A drug for amyotrophic lateral sclerosis (ALS), AMX0035 from the American startup Amylyx Pharmaceuticals, is one of the fruits of the "Ice Bucket Challenge" meme, popular in 2016. Funding for clinical trials of this drug is provided entirely by money raised through the "Ice Bucket Challenge." And so far, it seems the money was not in vain. According to the results of phase 2 trials, AMX0035 showed encouraging results in slowing the progression of ALS, particularly in maintaining muscle motor control. AMX0035 is a combination of sodium phenylbutyrate, which works to properly fold essential proteins in the cell, and tauroursodiol, which aims to protect the mitochondria of neurons, which produce energy.