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Webinar
Evidence-Based Consensus Guidelines for Genetic Counseling and Testing in ALS
About the Program: The practice of genetic testing in ALS has been impacted by high patient demand for testing, sponsored testing programs, and a new drug application to the FDA for the first gene-targeted therapy in ALS. However, many challenges exist, including few genetic counselors in ALS clinics, and issues with laboratory methods and reporting. Jennifer…
Free
What’s in a gene? And introduction to Familial ALS
An ALS diagnosis often comes out of nowhere. Most people do not even know what ALS is until they are diagnosed with it. Unfortunately, there are families where ALS is very well understood and an ALS diagnosis is common. People with familial ALS often have several known relatives who have lived and, in most cases,…
Free
Maintaining My Independence
VirtualA panel with occupational therapists in ALS/MND providing recommendations for PALS at different stages of their journey. Tips, considerations, and what can be done at home.
Free
Weekly HEALEY ALS Platform Trial Webinar
VirtualPlease join us on Thursday, June 8th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD will present updates on the Platform Trial and answer questions from the audience. This week, we will be joined by Brandy Quarles, MPH, to…
Free
Big Feelings in Familial ALS: A Community Conversation about Generational Trauma
When someone is diagnosed with ALS, it can devastate a family. Imagine multiple family members being diagnosed within your lifetime. And knowing that other living family members and future generations might be at risk. Imagine growing up with the specter of ALS chasing you. Being ever-present. Your family tree becomes suspect. Who had it? Who…
Free
A Pulmonologist Explains Tracheostomy and Invasive Ventilation for People Living with ALS
Date/Time: Monday, June 19, 2023, at 12:00 p.m. CST Registration Link: https://attendee.gotowebinar.com/register/4658833508087010396 About the Program: Not everyone with ALS will need or choose to have a tracheostomy, but there may come a time when it’s necessary for continued breathing. You may have respiratory weakness that can no longer be treated with a mask and non-invasive ventilation.…
Free
Scientific Advisory Council Update & Q&A
VirtualA mid-year update from the Scientific Advisory Council.
Free
Understanding Statistical and Clinical Significance
Presenters: Dr. Jinsy Andrews (Columbia University), Dr. Christina Fournier (Emory University), Dr. Eric Macklin (Mass General Hospital) What do researchers and scientists mean when they describe a study as “statistically significant?” How do people with ALS and clinicians understand whether or not a treatment option is “clinically significant?” Join us for a webinar and panel…
Free
Weekly HEALEY ALS Platform Trial Webinar
VirtualPlease join us on Thursday, June 22nd at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD will present updates on the Platform Trial and answer questions from the audience. We will be joined by Dr. Shafeeq Ladha of Barrow…
Free
Weekly HEALEY ALS Platform Trial Webinar
VirtualWeekly Q&A with guest speaker Hilda Gutierrez, MD of Beth Israel Deaconess Medical Center
Free
Weekly HEALEY ALS Platform Trial Webinar
VirtualWeekly Q&A with guest speaker Bill Cho, MD, PhD of Calico Life Sciences (Regimen F)
Free
Weekly HEALEY ALS Platform Trial Webinar
VirtualWeekly Q&A with guest speaker Sarah Heintzman APRN-CNP from Ohio State Universit
Free
A Manual of Instructions: Maps for a Few Dark Places
A Manual of Instructions: Maps for a Few Dark Places featuring Dr. Scott Eberle with an introduction by CCALS Founder, Ron Hoffman Sunday, July 16, 2023 1:00 - 2:00 p.m. ET It’s not often in life that you get a few maps for how to traverse the dark places of a serious illness. Scott Eberle, MD,…
A Neurologist Speaks on Advancements in Clinical Research for ALS
Join us for our July ALS Learning Series with Dr. Senda Ajroud-Driss, neurologist and director of the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine. She’ll discuss updates in ALS clinical research, provide information on trials that are currently recruiting, and review inclusion criteria, with a Q & A to…
Free
Weekly HEALEY ALS Platform Trial Webinar
VirtualRegimen G Drug Science Q&A Webinar with Denali Therapeutics
Free
NINDS Fundamental Neuroscience Working Group Public Webinar
NINDS Fundamental Neuroscience Working Group Public Webinar July 27, 2023 | 12:00 - 1:00 PM ET Please click this link to register for the webinar What is the Fundamental Neuroscience Working Group? Find out more here: NANDSC Fundamental Neuroscience Working Group FNWG Public Webinar Agenda (tentative) Introductory Remarks (Walter Koroshetz, 5 min) Committee Charge (Lyn Jakeman,…
Weekly HEALEY ALS Platform Trial Webinar
VirtualPlease join us on Thursday, July 27th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc will present updates on the Platform Trial and answer questions from the audience. This week, we will be joined by Dr. Suma Babu of Mass General Hospital to…
Free
Discover the Power and Flexibility of the iPhone for Those With ALS
Join me, Kristine Copley, our founder, Ron Hoffman, and tech genius Tom Meadows in a groundbreaking presentation about hidden and undocumented functionality in the Apple OS that can specifically benefit people with ALS. Tom’s childhood friend, Steve, was diagnosed with ALS in 2021. Steve's disease progressed and using his phone became more and more difficult.…