Dr. Nadia Sethi is a dentist by training and an advocate by experience. As a dental surgeon, Nadia already had a strong healthcare background when she experienced amyotrophic lateral sclerosis (ALS) first-hand as a caregiver for her late husband. Diagnosed with ALS in 2019, Dr. Sundeep Sethi served on the Peer Review Panel for the CDMRP ALS Research Program (ALSRP). His strength, passion, and drive to help the ALS community persevered throughout his personal battle with ALS. �When Sundeep was diagnosed, we felt helpless. Engaging with others in the community and helping to advance the science of ALS became a source of comfort and felt empowering while fighting a disease that takes so much away.�

Working with I AM ALS, a patient-centric ALS advocacy and support organization, Nadia led efforts to create ALS Signal, a comprehensive online platform for ALS clinical research information. As a searchable registry of ALS clinical trials around the world, ALS Signal provides a one-stop resource for patients and caregivers looking for clinical trial information. Nadia hopes the dashboard may have an even bigger impact in the future: �One of my hopes from the beginning of organizing this database was to share this information in ways that could impact the science. I do not see how we can achieve new treatments without an understanding of the current scope of ALS clinical research. I also maintain a growing list of pharmaceutical companies in ALS, including those with a preclinical ALS pipeline. Along with the grants we see coming from the CDMRP, this gives us a clearer view of the evolving global ALS research landscape, which is the future of our treatments.�

As for the future of ALS Signal, Nadia adds, �I have been thinking about possible opportunities to join forces with other complementary efforts that could maximize our combined impact. For example, the information in ALS Signal could enhance efforts like the CDC ALS Registry to help match patients enrolled in the Registry with all recruiting trials around the world and thereby also encourage greater patient participation in the Registry.�

Nadia currently serves as a consumer member on the ALSRP Programmatic Panel and plays a major role in helping to maintain program focus on research that is relevant and has the potential to make a significant impact on ALS. Speaking of her participation on the ALSRP Programmatic Panel, Nadia says, �I am so grateful for the opportunity to share information where it can make a tangible impact on ALS research. When facing ALS, we live on hope. These grants, this science, and the clinical trials born from them are our hope.�

In response to Nadia�s hard work, ALSRP Programmatic Panel Chair Dr. Lyle Ostrow expressed tremendous gratitude. �This remarkable effort by ALS patients, caregivers, and advocates to continually survey the landscape of early-phase ALS therapy development is invaluable as we refine our portfolio priorities and funding mechanisms to accelerate and improve the design and impact of early phase trials, encourage open science and resource sharing, and foster biomarker development.�

Nadia is also Co-Chair of the Northeast ALS Consortium Patient Education and Advocacy Committee (PEACe) and is active in other efforts to raise awareness about clinical trials recruitment, engage with researchers to share scientific information and publications, and advise clinical trial sponsors on patient-centric trial design.