Discussion on Family and ALS Hosted by Young Faces of ALS and Her ALS Story Tuesday, March 21, 2023 | 6:00 - 7:00pm EDT Although family dynamics are always different, one thing most of us have in common is wanting to find ways to best support each other through the good and bad times. On March 21st,…
Agenda The meeting presentations will be heard, viewed, captioned, and recorded through an online teleconferencing platform. The committee will discuss new drug application (NDA) 215887, for tofersen (BIIB067) intrathecal injection, submitted by Biogen Inc., for the treatment of amyotrophic lateral sclerosis (ALS) associated with a mutation in the superoxide dismutase 1 (SOD1) gene.
Cognitive Changes in ALS - Thursday, March 23, 2023 12:00 - 1:00 p.m. CT About the Program Join us for our March ALS Learning Series discussing cognitive functions with Catherine Lomen-Hoerth, MD. She will provide an overview of ALS, including its causes and symptoms, and how it affects cognitive functioning. Dr. Lomen-Hoerth will cover the…
Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive, invariably fatal neurological disease that attacks motor neurons and leads to their gradual degeneration and death, often within two years of onset. Currently, no treatments exist to stop or reverse the disease. This is the first meeting of a study committee mandated by Congress and sponsored by the National…
Please join us on Thursday, March 23rd 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. In addition, we will be joined by Jeffrey Rothstein, MD,…
Who We Are We are a group of caring people with various lived experiences with ALS, and professional expertise in the field of ALS. We understand the challenges associated with ALS, and simply want to be available to share resources and learnings that may help others. What We Do We make ourselves available for one…
Please join us for the Regimen F Drug Science Q&A Webinar on Monday, March 27th from 5:00-6:00 pm Eastern time. This webinar is open to all, and it serves as a great opportunity to learn more about the science and mechanism of action behind Regimen F, the most recent addition to the HEALEY ALS Platform Trial. Sabrina Paganoni, MD,…
Tuesday, March 28, 2023 12:30 PM ET Please join us for a webinar update on tofersen moderated by NEALS Co-Chair Dr. Jinsy Andrews. Dr. Timothy Miller will provide background on tofersen and updates from the March 22nd FDA Advisory Committee Meeting. Holly Fernandez Lynch, an expert in FDA pharmaceutical policy and regulatory standards, will be…
The ALS Association Greater Sacramento Chapter is committed to serving the needs of the ALS community during the COVID-19 crisis. We are offering Virtual Support Group Meetings to ensure those living with ALS and their caregivers continue to have access to their networks of support. Transition Support Group Meeting (Every fourth Tuesday of every month.)…
Familial or sporadic ALS/MND, the importance of genetic counselling and testing cant be emphasized enough. Join us for this scenario-based discussion which will look at real situations ranging from an ALS/MND asymptomatic carrier to someone whose parent had ALS/MND, but has not done genetic testing.
Join us for an educational overview of the Advanced Research Projects Agency for Health (ARPA-H), the new government agency proposed by President Biden to improve the government’s ability to speed biomedical and health solutions. This agency was created to support transformative research and development to drive biomedical and health breakthroughs – ranging from molecular to…
***If you’ve signed up already in 2023, there’s no need to do it again. You will be added to the calendar invite.*** March is marching along, but let’s take a break to just hang out together. For those who may not know, social hour is an hour-long meeting where members of the community can come…
It’s often thought that ALS only affects older, white men. The reality is that an entire community of women are currently living with ALS and they’re working hard to change this misunderstanding and build awareness that this disease can impact everyone. When women are diagnosed with ALS, it is a unique experience with specific challenges…
Who We Are We are a group of caring people with various lived experiences with ALS, and professional expertise in the field of ALS. We understand the challenges associated with ALS, and simply want to be available to share resources and learnings that may help others. What We Do We make ourselves available for one…
The ALS Research Collaborative (ARC) and ARC Data Commons Discussion and demo led by Dr. Fernando Vieira Thursday, April 6, 2023 | 3:00 - 4:00pm EDT On Thursday, April 6, 2023 at 3:00 pm ET, join a special ALS TDI Town Hall to hear Dr. Fernando Vieira, CEO and CSO at ALS TDI, provide an overview…
Who We Are We are a group of caring people with various lived experiences with ALS, and professional expertise in the field of ALS. We understand the challenges associated with ALS, and simply want to be available to share resources and learnings that may help others. What We Do We make ourselves available for one…
Prof Guillaume Hautbergue is an expert in RNA biology and he and his lab recently published on a peptide that was able to prevent the death of nerve cells and protect them from degeneration in C9orf72-ALS/FTD animal models. He also recently reported a gene therapy approach targeting the same biological process. More Information: https://www.sheffield.ac.uk/neuroscience-institute/news/scientists-discover-how-prevent-death-nerve-cells-most-common-genetic-forms-mnd-and-dementia
The ALS Association Greater Sacramento Chapter is committed to serving the needs of the ALS community during the COVID-19 crisis. We are offering Virtual Support Group Meetings to ensure those living with ALS and their caregivers continue to have access to their networks of support. Making Connections Support Group Meeting (Every third Saturday of every…
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,…
Who We Are We are a group of caring people with various lived experiences with ALS, and professional expertise in the field of ALS. We understand the challenges associated with ALS, and simply want to be available to share resources and learnings that may help others. What We Do We make ourselves available for one…
The ALS Association Greater Sacramento Chapter is committed to serving the needs of the ALS community during the COVID-19 crisis. We are offering Virtual Support Group Meetings to ensure those living with ALS and their caregivers continue to have access to their networks of support. Sacramento Support Group Meeting (Every third Saturday of every month.)…
The 5th Annual Gala of Hope Join us for an evening filled with good food, drinks, a silent auction, live entertainment and more! Saturday, April 15, 2023 6:30PM-11:30PM ET Vie by Cescaphe, 600 N Broad St, Philadelphia, PA Guests speakers to include ALS Hope Foundation President, Dr. Terry Heiman-Patterson; representatives from Temple Health; and Joel Goldhirsh and Keynote Speaker Dr.…
Intimacy and ALS Led by members of the ALS community Tuesday, April 18, 2023 | 5:30 - 7:00pm EDT From dating and relationships to sexuality and your sex life, ALS changes a lot. This special 1.5-hour-long ALS Town Hall will attempt to cover the many ways that intimacy can be affected by ALS, while also discussing how…
