United to Discover | December 2025

Research Updates from ALS United Illinois

Breakthroughs and Collaboration at the United to Discover Dinner 

Joumana Fawaz-Baroody, RN, BSN, Vice President of Care Services, ALS United Illinois

The Second Annual United to Discover event, hosted by ALS United Illinois, brought together leading scientists and clinicians to share emerging discoveries and strengthen collaboration in the fight against ALS. The program highlighted major advances in research, diagnosis, and multidisciplinary care.

The evening opened with a keynote presentation by Dr. Don Cleveland on designer DNA drugs, a groundbreaking new class of therapies that created a watershed moment in ALS. These treatments had shown the ability to slow and even partially reverse inherited ALS, with clinical trials extending into sporadic ALS and other neurodegenerative diseases.

Dr. Paschalis Kratsios then presented his team’s work using novel C. elegans and mouse models to study toxic antisense-derived dipeptide repeat proteins in C9ORF72-related ALS/FTD, helping clarify why sense-targeted therapies failed and where future treatments may be more effective.

Dr. Naoum Issa discussed strategies to achieve faster ALS diagnosis, introducing intermuscular coherence as a promising biomarker of upper motor neuron dysfunction.

The event concluded with Dr. Ryan Jacobson, who reviewed the science and clinical care of SOD1-associated ALS, current treatment evidence, and the importance of a multidisciplinary approach to supporting families with hereditary ALS.

Together, these sessions showcased promising scientific momentum and reinforced the value of collaboration across the ALS community.

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Getting to a Diagnosis Faster

Naoum Issa, Kourosh Rezania

We have tested this system in about 250 patients with early symptoms suggestive of ALS, as well as in a similar number of participants without symptoms. Using this new approach, we identified 20% more patients with ALS at earlier stages compared to traditional methods – on average, about four months sooner. An earlier diagnosis could allow for more timely treatment interventions and earlier participation in clinical trials.

For updates as the validation trial proceeds, email Naoum.Issa@uchicagomedicine.org or follow on LinkedIn.

Reference: Issa NP, Aydin S, Polley E, Carberry N, Garret MA, Smith S, Habib AA, Baumgartner NW, Soliven B, Rezania K. Intermuscular coherence as an early biomarker for amyotrophic lateral sclerosis: The protocol for a prospective, multicenter study. PLoS One 2024;19: e0303053.

Funding: NIH R01NS116262. Intermuscular coherence: A novel biomarker for upper motor neuron dysfunction in ALS. Principal Investigators Kourosh Rezania, MD, Naoum Issa, MD, PhD. University of Chicago.

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Advancing Research Through Collaboration

Joumana Fawaz-Baroody, RN, BSN, Vice President of Care Services, ALS United Illinois

At ALS United, we remain dedicated to accelerating the discovery of new treatments and, ultimately, a cure for ALS. With the support of our community, we fund innovative research, foster global collaboration, and invest in emerging scientists who will drive the next generation of breakthroughs.

This year, ALS United members have committed nearly $3 million to a strong and diverse research portfolio that advances scientific discovery and clinical progress.

2024–2025 Funded Research Initiatives

• AMP ALS (FNIH): A public–private partnership building a centralized ALS data platform, developing validated biomarkers, improving clinical outcome measures, and identifying new therapeutic targets.
• ALS Research Network: A national collaborative network coordinating research efforts, sharing data, and strengthening ALS scientific infrastructure.
• ALS Research Fellowships: Competitive fellowships supporting early-career investigators pursuing innovative ALS research.
• Northeast ALS Consortium (NEALS): A leading clinical research group conducting high-quality ALS clinical trials and expanding patient access to studies.
• American Brain Foundation – ALS Research: Funding promising neurological research, including significant initiatives that advance ALS understanding and treatment development.
• Essey Research Award: Recognizing and supporting outstanding investigators whose work is making a major impact on ALS science.
• NEW! Collaboration with The Robert Packard Center for ALS Research at Johns Hopkins: ALS United is pleased to announce a new partnership with The Robert Packard Center for ALS Research at Johns Hopkins to jointly fund preclinical basic science research. This collaboration reflects a shared commitment to accelerating breakthrough discoveries, deepening the fundamental understanding of ALS, and advancing research that may change the trajectory of the disease. Together, both organizations aim to strengthen collaboration across the ALS research community and create a model for future cooperative funding initiatives.
• Supporting Clinical Trials: ALS United also actively supports comprehensive clinical trials focused on improving quality of life and advancing effective therapies. A variety of tools are available to help individuals explore clinical trials that best match their needs and preferences.

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ALS Network and ALS United Announce New Research Grantees

The ALS Network, in partnership with 12 ALS United member organizations, announces the selection of its 2025 Research Innovation Grantees—an accomplished group of scientists and clinicians whose work is accelerating new approaches in ALS treatment, prevention, and understanding. Together with ALS United, this collaboration reflects a shared determination to advance scientific discovery and translate innovation into tangible progress for people living with ALS. These grants underscore the ALS Network’s commitment to driving global research while strengthening its mission priorities of expert care and bold advocacy. 

This year’s cohort represents leading investigators across multiple disciplines, including genetics, environmental studies, regenerative medicine, biomarker discovery, and novel clinical interventions. Their work aims to bring real progress and real hope to people living with ALS today. Grantees were selected via an annual, competitive process with applications reviewed by the ALS Network’s world-class Scientific Advisory Committee and Community Research Committee. 

“Every research partnership moves us closer to breakthroughs the ALS community urgently needs,” said Sheri Strahl, MPH, MBA, president and CEO of the ALS Network. “We support revolutionary, transformative science that strengthens our shared path toward effective treatments and, ultimately, cures.”

The ALS Network’s 2025 Research Innovation Grants have been awarded to the following investigators and institutions: 

• Sandra Almeida, PhD, University of Massachusetts Chan Medical School, Department of Neurology for Investigation of TDP-43 Dysfunction in an iPSC-Based Three-Dimensional Multicellular Model of C9ORF72-ALS/FTD.
• Frederick Arnold, PhD, Washington University, St. Louis for Investigating Hyperphosphorylation of tau serine 262 as Novel Biomarker and Therapy Target in ALS.
• Claire Clelland, PhD, MD, University of California San Francisco for Rapid Screening of a Miniaturized Cas and gRNAs for AAV Delivery of C9orf72 Gene Therapy.
• Richard Daneman, PhD; John Ravits, MD, University of California San Diego for Multi-omic Analysis of Cerebrovascular Changes in Patients with ALS.
• Faranak Fattahi, PhD; Sarah Kishinevsky, PhD, University of California San Francisco, and EverTree Bio for Evaluation of Glioprotective Small Molecules for ALS therapy.
• Clotilde Lagier-Tourenne, MD, PhD; Liron Bar-Peled, PhD, Massachusetts General Brigham, Department of Neurology and Krantz Family Center for Cancer Research for Chemical Proteomics Drug Discovery in ALS.
• Timothy Miller, MD, PhD, Washington University School of Medicine, Department of Neurology for Probing Human Motor Neuron Vulnerability Using Spatial Transcriptomics.
• Patrick Murphy, PhD, University of Connecticut Medical School for Temporal Control of Endothelial TDP-43 Deletion Reveals Divergent Mechanisms in ALS and FTD.
• Stanislav Piletsky, PhD; Daniel Heller, PhD, Memorial Sloan Kettering Cancer Center and The Cancer Nanomedicine Laboratory for A Machine Learning-Enabled Nanosensor Array for ALS Diagnosis and Biomarker Discovery.
• Daniel Rubin, MD, PhD; Hadar Levi-Aharoni, PhD; Leigh Hochberg, MD, PhD, Massachusetts General Hospital for Developing Reliable Brain-Computer Interface Systems to Restore Communication for People with ALS.
• Marc Weisskopf, PhD, Harvard TH Chan School of Public Health for Military Occupation and Deployment and Risk of ALS in Veterans.
• Noah Zaitlen, PhD; Roel Ophoff, PhD; Martina Wiedau, MD, University of California Los Angeles for Circulating Cell-Free DNA as Biomarker for Amyotrophic Lateral Sclerosis Diagnosis and Disease Progression.
• Lyandysha Zholudeva, PhD, Gladstone Institutes for Engineering Human Spinal Circuits to Evaluate Inhibitory Interneuron Therapies for ALS.

The 2025 grants are part of the ALS Network’s expanded commitment to research at a time when federal funding cuts threaten momentum in the field. By investing in high-impact scientific discovery, the organization continues to ensure progress does not stall for the ALS community. 

Grant funding is supported by participating members of ALS United, a community of independent ALS nonprofits dedicated to providing local care services, advancing research initiatives, and advocating for policies that benefit people living with ALS. Led by significant investments from the ALS Network and ALS Northwest to accelerate progress, participating organizations include: ALS Network, ALS Northwest, ALS United Connecticut, ALS United of Georgia, ALS United Illinois, ALS United Greater New York, ALS United Mid-Atlantic, ALS New Mexico, ALS of Nevada, ALS United North Carolina, ALS United Ohio, ALS United Orange County, and ALS United Rocky Mountain.

“ALS Northwest is proud to invest in research that has the potential to transform the future of ALS,” said Cassy Adams, MSW, LCSW, Executive Director of ALS Northwest. “It reflects our belief that strategic, collaborative funding can accelerate progress. We’re committed to fueling visionary science that leads to real breakthroughs and to standing with those living with ALS as we work toward a cure.”

Focused on maximizing impact through a centralized research program facilitated by the ALS Network, the partnership reduces infrastructure costs, eliminates duplication, and increases direct funding to fuel innovative, promising science. To learn more about this unique and impactful research program visit alsnetwork.org/research.

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Share Your Research with the ALS Community

We’d love to hear from you! If you have updates on your projects or are interested in contributing an article about your research, please email Joumana at joumana@alsunitedchicago.org. Let’s showcase your work and advance ALS discovery together!