Federal agencies provide an important forum for the brain community to connect with policymakers and officials, including in support of efforts to deliver safe and effective treatments for brain conditions. Join us for an educational webinar providing an overview of the federal regulatory process. We will highlight opportunities with the Food and Drug Administration (FDA),…
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. Tahoe Support Group Meeting (Every third Thursday of every month.)…
Please join us on Thursday, March 16th 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 discussing the importance of biomarkers…
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.)…
Remembrance and Reflection The ALS Hope Foundation and the MDA/ALS Center of Hope at Temple Health invite you to attend our Remembrance and Reflection Memorial ServiceSunday, March 19, 2023 11:00AM ET The Inn at Villanova, 601 County Line Road, Wayne, PA 19087 Light refreshments will be served. Please RSVP to Paris DiLorenzo by March 13, 2023 paris@alshopefoundation.org or…
In this webinar, Dr. Angela Genge will discuss the research behind AP-10l and provide an overview of the trial and what study participation involves. The phase 2 trial of AP-101 is currently enrolling participants with Familial Amyotrophic Lateral Sclerosis and Sporadic Amyotrophic Lateral Sclerosis.
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
