Are you one of the many pALS who had genetic testing this year? Grab your genetic test report and sit down with Jennifer Roggenbuck, MS, CGC, Genetic Counselor at The Ohio State University Medical Center, to discuss what it all means. Common test outcomes, implications for family members, and next steps will be discussed.
In partnership with The ALS Association, NEALS offers live webinars for people with ALS, caregivers and the broader ALS community. Topics include updates on clinical trials, best practices for clinical care, and current research efforts in ALS causes and treatments. Our webinars also offer participants the opportunity to ask questions directly of the experts running clinical trials and conducting research activities.
Speaker: Raghav Govindarajan, MD, University of Missouri
Given the complexity of issues accompanying an ALS diagnosis, professional organizations increasingly recommend that ALS patients and their families receive specialist palliative care services concurrent with clinic-based neurological multidisciplinary care. However, no broadly accepted guidelines define the optimal integration of palliative care into existing clinical frameworks. In fact, most patients with ALS may never interact with a specialist palliative care team at any point over the course of their disease. This webinar introduces palliative care into the ALS clinic and provides an understanding of its role and a framework into its integration in the care of ALS patients.
Presenter: James D. Berry, MD, MPH, Massachusetts General Hospital
We will review edaravone evidence, talk about the use of biomarkers to understand the effect of medical therapies, present the design of the REFINE-ALS study, and discuss how people can get involved in the study.