Participation in the National ALS Registry

About the Program: ALS research depends on people living with ALS to join the National ALS Registry. Every individual’s story can contribute to our understanding of the disease, its causes, and how to fight it. Join us for our January ALS Learning series with Reshma Punjani and Janie Gobeli to learn how the National ALS Registry helps advance research. Reshma will discuss how to join the National ALS Registry, what information they collect and why, and the type of research the registry is conducting, while Janie will discuss her personal experience with the registry. A Q&A session will follow the discussion. The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to the Gilbert & Jacqueline Fern Foundation, Biogen, & Mitsubishi Tanabe Pharma America for sponsoring this webinar.

About the Speakers: Reshma Punjani, MPH, is a Health Scientist Epidemiologist with the CDC/ATSDR’s National ALS Registry. She graduated with her Master of Public Health Degree in Epidemiology in 2016 and has been with the National ALS Registry for the past eight years. Reshma has contributed to multiple ALS research publications including prevalence, incidence, and ALS cohort analyses, and geospatial ALS studies. Janie Gobeli serves as an advisory committee member for the HEALEY ALS Platform Trial and the QurAlis/CISCRP Global Patient Advisory Board, an ALS Research Ambassador for the Northeast ALS Consortium (NEALS), and a member of the Les Turner ALS Foundation’s Support Services Committee. She was diagnosed with ALS in 2021. As a former elementary education teacher and licensed cosmetologist, she is proud to work as an ALS educator, advisor, and speaker because it allows her to be a voice for all ALS warriors and follow her lifelong passion for learning and educating others.