Clinical trial design is evolving in the ALS/MND community. This webinar updates us on what the new models are, how they are changing the landscape and what are the practical implications for our community. Moderators: Gethin Thomas - Executive Director, Research | Motor Neurone Disease Australia Claire Magnussen, PhD - Program Manager, CAPTURE ALS, McGill […]
Please join us on Thursday, September 22 at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Sabrina Paganoni, MD, Ph.D., and Merit Cudkowicz, MD, MSc will present this week’s updates on the HEALEY ALS Platform Trial and answer questions from the audience. We will also be joined by guest speakers Mariah […]
ALS Town Hall: Meet Your ALS Orgs #2 Introduction to Organizations in the ALS Space Tuesday, September 27, 2022 | 4:00 - 5:30pm EDT You are invited to attend our second event in the new Town Hall series “Meet Your ALS Orgs”. ALS TDI is thrilled to be partnering with I AM ALS, Answer ALS Research Program, and […]
Michael S. McGrath, MD, PhD – Chief Scientific Officer Neuvivo, Professor Department of Medicine, UCSF. Michael S. McGrath, MD, PhD is Professor, Departments of Laboratory Medicine, Pathology, and Medicine at The University of California San Francisco (UCSF). He has authored over 200 scientific articles in the fields of AIDS, cancer and neurological disease since joining […]
Weekly Q&A with guest speaker Michael Elliott, MD, FAAN from Swedish Medical Center in WA
The Familial ALS team is excited to host Claire Clelland, PhD, MD, MPhil on Monday October 3rd at 6 p.m. ET/3 p.m. PT. Dr. Clelland is a neurologist specializing in the care of patients with dementia, including C9 carriers. Her lab at UCSF is developing novel CRISPR gene editing approaches for dementia and ALS, starting […]
You will learn: The symptoms and early signs of ALS How ALS impacts those living with the disease Best practices for responding to people who cannot speak, walk or have another disability Much more through the question and answer section Jinsy Andrews, MD, MSc, FAAN: Director of Neuromuscular Clinical Trials at Columbia University in the City […]
Presenters: Dr. Merit Cudkowicz (Sean M. Healey & AMG Center for ALS at MGH) and Dr. Shafeeq Ladha (Barrow Neurological Institute) The purpose of this webinar is to provide an overview of how SLS-005 (trehalose) may help to slow ALS and illustrate what potential participants can expect when enrolling in Regimen E of the Healey […]
About the Program: Caregivers undergo changing dynamics and burnout when caring for a loved one. It’s important for others to maintain a more understanding and loving perspective so that they can cope effectively. Please join us on Thursday, October 6 from 12-1 p.m. (CT) for this month’s ALS Learning Series, “Navigating the Challenges of Caregiving […]
Weekly Q&A with guest speaker Catherine Douthwright, PhD, CCRP of UMass Worcester
October 12 @7:00-8:00 AM (EST New York) In this webinar we will learn more about the new assistive technology of voice banking, how it works, when in the ALS/MND journey should it be done, and how to get access. Moderator: Sara Feldman – ALS Hope Foundation Panel: Alicia Gibb – MND New South Wales & […]
We are excited to host EverythingALS Community Event: Telemedicine and You: Building Proactive, Personalized Care for all People with ALS. - Brian Wallach, Founder of Synapticure - Brook Croke, MPH, Certified genetics counselor in the Department of Pediatrics at SIU School of Medicine - Danielle Geraldi Samara , MD , Neurologist - Dr. Eric Anderson […]
Please join us on Thursday, October 20th at 5:00 pm EST (4:00pm CST/2:00pm PST) for a webinar about the HEALEY ALS Platform Trial. Sabrina Paganoni, MD, PhD and Merit Cudkowicz, MD, MSc will present updates on the Platform Trial and answer questions from the audience. In addition, this week will feature a special introduction to Site Investigator […]
Join us in learning more about genetic counselling in ALS/MND. Genetic counsellor Ashley Crook will be providing us with an overview of genetic counselling, different types of genetic testing, and genetic counselling considerations before testing.
Join Dr. Nadia Sethi, the Director of Community Outreach and Engagement at the ALS Therapy Development Institute (ALS TDI), for this new virtual discussion series. These conversations will provide an overview of research at ALS TDI, discuss current clinical trials, and provide space to converse and ask questions about ALS science and research. Through this series, […]
About the Event Dr. Paganoni is an Associate Professor at Harvard Medical School and works as a physician scientist at the Healey Center for ALS at Massachusetts General Hospital and at Spaulding Rehabilitation Hospital.Her research focuses on clinical trials and therapy development for ALS. She has served as PI of several ALS clinical trials and […]
This webinar will provide information on ALS/MND treatments currently in Phase 3 Clinical Trials. We will hear directly about timelines, where the sites are, other programs offered, and who to contact if more information is needed. Moderated by Gethin Thomas, Executive Director, Research - MND Australia, hear from AB Science, Amylyx, Biogen, Clene Nanomedicine, Ferrer, […]
About the Event Dr. Heiman-Patterson is the Director of the Center for Neurodegenerative Disorders and a Professor in the Department of Neurology at the Lewis Katz School of Medicine at Temple University. She directs the MDA/ALS Center of Hope, including the clinical and laboratory research programs. Her career has always been dedicated to research in neuromuscular […]
Speakers: Dr. Merit Cudkowicz (Sean M. Healey & AMG Center for ALS at MGH) and Dr. Nazem Atassi (Sanofi) The webinar discussion will include the mechanism of action of RIPK1 inhibition, efficacy in animal models, results from Phase 1 first in human studies, and Phase 2 study design and update on enrollment.
Dr. Richard Bedlack grew up in a small town in central Connecticut. He went to college at William and Mary in Virginia, then back to Connecticut for an MD and Ph.D. in Neuroscience at UConn. Finally, he came to Duke where he completed his Medicine Internship, Neurology Residency, Neuromuscular Fellowship, and Masters in Clinical Research […]
Thursday, December 1st, 5:00 pm EST: Weekly Q&A with guest speaker Catherine Douthwright PhD, CCRP from UMass Worcester- Click here to register Catherine Douthwright PhD, CCRP Catherine brings years of previous research coordinator experience to her current role working on the Platform Trial at the University of Massachusetts Chan Medical School in Worcester, MA, where she also serves […]
ALS brings with it a lot of uncertainty and loss emotionally and physically – for the person living with ALS and their caregivers and loved ones. As a caregiver, you’ll experience many different emotions along this journey, and with so much to learn plus the shock of diagnosis, it can feel like you’re lost in a foreign […]
About the Event Dr. Merit Cudkowicz is the Director of the Sean M. Healey & AMG Center for ALS, Chief of Neurology at Mass General, Director and the Julieanne Dorn Professor of Neurology at Harvard Medical School. Dr. Cudkowicz’s research and clinical activities are dedicated to the study and treatment of people with Amyotrophic Lateral […]
About the Program: Many people living with ALS struggle to understand whether it is OK to exercise, what kind of exercise is most beneficial, and whether exercise slows disease progression. Please join as, Hannah Redd PT, DPT, NCS, at Shirley Ryan AbilityLab, will discuss the benefits of exercise among people living with ALS along with […]
Please join us on Thursday, December 8th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Sabrina Paganoni, MD, PhD, and Merit Cudkowicz, MD, MSc will present updates on the Platform Trial and answer questions from the audience. In addition, we will be joined by Mia Resendes, Primary Coordinator […]
Are you looking to share your story with a broader audience or increase the scope of your advocacy? If so, using social media platforms like Twitter may help. If you feel daunted or overwhelmed by using social media, you’re not alone! That is why community members Mandi Bailey (aka the Self-Taught Social Media Mama) and […]
McFinn Lovere ALS ADVOCATE We are excited to host EverythingALS Community Event: Share your Tips and Tricks for Living with ALS We invite you to EverythingALS Community “Tips and Tricks” Webinar, hosted by McFinn Lovere from EverythingALS Team. We are excited to host EverythingALS Community Event: Share your Tips and Tricks for Living with ALS We invite […]
