We are excited to host EverythingALS Community Event: Antisense Oligonucleotide Therapy for ALS. We invite you to join us and other people with ALS and families to engage in a positive setting of collaboration and community. The meeting will be on Wednesday, March 30, 2022 at 4:00 pm PT -5:00pm Mountain Time -6:00pm Central […]
Please join us on Thursday, March 31st at 5:00 pm EST (4:00pm CST/2:00pm PST) for our weekly Q&A webinar about the HEALEY ALS Platform Trial. Sabrina Paganoni, MD, PhD and Merit Cudkowicz, MD, MSc will present updates on the HEALEY ALS Platform Trial and answer questions from the audience. This week we will be focusing the conversation on […]
Event by Michelle Lorenz and No More Excuses! ALS Watch Dog Group Join April 4th at 7 pm ET, 4 pm PT The AACT for ALS was signed into law in by President Biden on December 2021. The bill was among the most cosponsored bills in the last half century. Congress just appropriated money for FY 2022. But […]
We invite you to join us and other people with ALS and families to engage in a positive setting of collaboration and community. The meeting will be on Wednesday, April 13, 2022 at 4:00 pm PT -5:00pm Mountain Time -6:00pm Central Time -7:00pm Eastern Time The meeting will be approximately 45-60mins long followed by […]
Overview Rare diseases pose unique challenges to the health care system. Unlike common diseases that affect millions, such as type 2 diabetes, a rare disease may have only 50 patients worldwide, spanning numerous countries, languages, and cultures. The detection of rare diseases—~75% of which have a genetic basis—is generally difficult and costly, often requiring sequencing […]
Please join us on Thursday, April 14th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial and a special introduction to Kuldip Dave Ph.D. vice president for research at the ALS Association. Sabrina Paganoni, MD, Ph.D., and Merit Cudkowicz, MD, MSc will present this week’s updates on the HEALEY ALS Platform Trial […]
ALS Town Hall: ALS TDI Demonstrates New Groundbreaking Biomarker Tools for ALS Thursday, April 21, 2022 | 3:00pm - 4:30pm ET Recently, ALS TDI and Google introduced new groundbreaking digital tools that are able to objectively measure ALS symptom progression. These new tools have now been released publicly to anyone who might make use of them – including clinicians, […]
We are excited to host EverythingALS Community Event: Augmentative communications program for ALS. We invite you to join us and other people with ALS and families to engage in a positive setting of collaboration and community. The meeting will be on Wednesday, April 27, 2022 at 4:00 pm PT -5:00pm Mountain Time -6:00pm Central […]
Thursday, April 28, 2022 from Noon to 1:00pm CT About the Program: Are you a veteran living with ALS? Need help navigating the Veterans Administration system and don’t know where to start? Hear from Robert Statam, Sr. and Winston Woodard III of the Paralyzed Veterans of America (PVA) who specialize in providing navigation services for […]
Please join us on Thursday, April 28th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial and a special introduction to Kelly G. Gwathmey M.D., site investigator at Virginia Commonwealth University. Sabrina Paganoni, MD, Ph.D., and Merit Cudkowicz, MD, MSc will present this week’s updates on the HEALEY ALS Platform Trial and […]
Raising and supporting children while impacted by ALS. You got questions? We got answers! We know that supporting children while your family navigates ALS can present unique challenges. I AM ALS’ amazing community members – including parents living with ALS, caregivers, ALS gene-carriers and child development professionals – are here to listen and answer your questions […]