Amyotrophic Lateral Sclerosis Insights

This week's must-know community updates, latest research & events

March 19, 2025

Introduction to Gene Therapy - out now!

We're thrilled to announce the launch of the first guide in our gene & cell therapy series.

Read it for free here:

www.allmyhealth.io/reports

Stay tuned for next week when we will launch the next report in the series.

Would you like to sponsor the next report in the series?

Enquire here

Latest Research

In their research, Filippi et al. (2025) highlight the potential of neuroimaging techniques like MRI and PET scans to improve clinical trials for amyotrophic lateral sclerosis (ALS). These imaging methods could serve as standardized biomarkers, which are currently lacking, to measure the effectiveness of treatments. By using these techniques, researchers hope to better select and categorize patients for studies, potentially making trials shorter and less expensive.

The study underscores the importance of finding reliable biomarkers for ALS, which could lead to more efficient development of therapies. The use of MRI and PET metrics is particularly promising for enhancing the precision of patient assessment, which is crucial for the advancement of treatment options. The findings suggest that incorporating these neuroimaging endpoints could be a significant step forward in ALS research and patient care.

Clinical Trials

This is a list of upcoming or ongoing clinical trials that are actively recruiting and have been listed or updated in the last two weeks:

The Study Evaluating the Improvement of Nutritional Status and Frailty with Silkworm Pupa Powder Among Patients with Motor Neuron Disease

Electrical Impedance Myography: Natural History Studies inNeuromuscular Disorders and Healthy Volunteers

Discovery and Validation of Protein Structural Complexes in Circulating Biofluids As Novel Biomarkers for Early Diagnosis, Prognosis and Therapeutic Management of Patients Affected by Neurodegenerative Disorders

Study of Inherited Neurological Disorders

View the full list of clinical trials →

Community News

Target ALSMar 13, 2025

Scientific innovation is driven by those who refuse to accept limitations. In Puerto Rico, Dr. Valerie Wojna, Dr. Brenda Deliz, and Frances Aponte Caraballo are pioneering efforts to decode the complexities of ALS within the island’s diverse population. Through the Target ALS Global Natural History Study, their research is identifying unique disease patterns, tracing biomarkers, and improving diagnostic precision—all critical steps toward personalized treatments. Their findings not only contribute to a global understanding of ALS but also highlight the necessity of inclusive research that represents the full spectrum of disease progression.

But their impact goes beyond the lab. They are building infrastructure where none existed before, creating ALS education programs, and empowering future neuroscientists. Just two years ago, an ALS clinical trials unit in Puerto Rico was only a vision—today, thanks to their dedication, it is a reality. Those living with ALS who once faced isolation now have access to specialized care, cutting-edge research, and a support system that sees them, hears them, and fights for them.

This #WomensHistoryMonth, we recognize these incredible women who are rewriting the future of ALS in Puerto Rico. Their passion, persistence, and belief in a better tomorrow are proof that change is possible—and that every voice, every discovery, and every step forward brings us closer to a world where #EveryoneLives

Read More: https://bit.ly/41K5S5k

ALSAssociationMar 15, 2025

We’re excited to announce the upcoming ALS Awareness Month event hosted by I AM ALS! This year, 6,000 flags will be placed on the National Mall to honor people living with ALS, people we’ve lost, and who carry the ALS gene.

We hope to see you there!

www.iamals.org/flag2025/

ALS CanadaMar 13, 2025

Every day, members of the ALS community across Canada work tirelessly in their own unique ways to move the needle toward a shared goal: #aWorldFreeOfALS.

ALS Canada is proud to present the prestigious King Charles III Coronation Medal to 39 Canadians from the ALS community across the country, recognizing their outstanding contributions toward a world free of ALS.

Congratulations to all recipients. We are thrilled to honour your efforts in advocacy, research, and support in making a meaningful difference for the nearly 4,000 Canadians living with the disease.

For the full list of recipients and to read more about the King Charles III Coronation Medal, visit https://bit.ly/3FpdD9q.