Amyotrophic lateral sclerosis (ALS) is a rapidly progressive, invariably fatal neurological disease. Individuals impacted by ALS include those living with the disease, their caregivers, and presymptomatic individuals at risk for developing ALS. Currently no treatments are available to stop or reverse the disease, although various FDA-approved formulations may extend life by several months The National…
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…
On September 6, 2023, the National Academies’ ad hoc Committee on Unequal Treatment Revisited will host the third public workshop in a virtual series examining federal efforts and initiatives aimed at reducing racial and ethnic inequities in health care access, utilization, and quality. Leaders from several government agencies will provide insights and answer questions during a panel…
The International Alliance of ALS/MND Associations surveyed the community about the Fundamental Rights of People living with ALS/MND and Caregivers. Learn more about the data, strengths and weaknesses at a global level, the questions raised and the topics that require further attention, and how these compared to our 2021 survey.
Carolyn Parrott, whose daughter passed in 2021 after bravely facing bulbar-onset ALS, expressed a longing to connect with other mothers in solidarity. Join Carolyn and our CCALS team in this unique opportunity to share your mother-heart with others. Register
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…
148th Annual Meeting of the American Neurological Association September 9 - 12, 2023 Opening Symposium: September 9, 2023 Philadelphia Marriott Downtown Philadelphia, Pennsylvania
The ALS Hope Foundation is pleased to present the 16th Annual Hope Walks for ALS on September 10, 2023 at Temple University’s Ambler Campus! This event provides much needed funds to support the clinical, research and educational efforts of the ALS Hope Foundation and is the only walk in the area that supports the work…
Sunday, September 10, 2023 | 10am Zervas Elementary School 30 Beethoven Ave, Waban, MA 02468 The ALS TDI Walk for Research unites those impacted by ALS while raising crucial funds for ALS research, and paying homage to the town of Newton, where ALS TDI originated.
ABOUT THE EVENT Attendees of the 2.5-day conference, including patients, providers, researchers, clinicians, biopharmaceutical companies, regulatory reviewers and scientists, will leave with an understanding of: C-Path's Rare and Orphan Disease Program's current and future impact on drug development in rare diseases from the perspectives of patients, regulators and industry partners The Critical Path for Rare…
The International Neuropalliative Care Society invites you to join us in Minneapolis, Minnesota, for INPCS23: Coming Together to Transform Care, which will take place at the Minneapolis Downtown Hilton, September 12-15, 2023. This 3-day event, which kicks off with a welcome reception on Tuesday night, September 12th, will feature discussion panels, speakers, clinical rounds discussions,…
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…
We are pleased to announce the launch of a brand new event: Clinical Trials in Rare Diseases will take place on 13th-14th September 2023 in Princeton! This event will explore the challenges in clinical trials for orphan drugs and rare diseases, bringing together clinical operations professionals from across multiple therapeutic areas to discuss common obstacles…
September 13 7:00pm ET with Julie Brown Yau, PhD Our own Trauma & Spiritual Care Liaison, Julie Yau, Ph.D., SEP, will be hosting a monthly gathering for our community focused on trauma awareness and healing. CCALS has long recognized how traumatic an ALS diagnosis is, and the continuing challenges and trauma that can arise while…
PACTALS represents a large ALS/Motor Neurone Disease (MND) community including the very active research groups in the Asia – Pacific region. The Pan-Asian Consortium for Treatment and Research in ALS (PACTALS) was established in December, 2014. The concept is similar to other regional existing Consortia namely the North-East Amyotrophic Lateral Sclerosis (NEALS) in the United…
Thursday, September 14, 2023, 12:00 p.m - 1:00 p.m CST Join us for our September ALS Learning series with Dr. Edward Kasarskis where he’ll discuss nutrition and hydration, constipation, and bowel management in ALS. The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to…
3:00pm ET Come share the informal gathering designed to offer genuine support for those engaged in ALS caregiving. Enjoy the opportunity to be with other folks who have an intimate understanding of ALS and share your unique point of view as a caregiver. It is truly a wonderful experience to sit in council with ALS…
Please join us on Thursday, September 14th 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 Jennifer DiMartino from ALS…
Location: Landmark Bethesda Row, Meet Andrea Lytle Peet ‘Go On, Be Brave’ is a film about Andrea Lytle Peet’s race against time - a diagnosis of ALS and an attempt at the impossible - to be the first person with ALS to complete a marathon in all 50 states. Trailer
Location: Cinemark Bistro ‘Go On, Be Brave’ is a film about Andrea Lytle Peet’s race against time - a diagnosis of ALS and an attempt at the impossible - to be the first person with ALS to complete a marathon in all 50 states. Trailer
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 Caregivers Only group offers a time to talk about all the issues caregivers face in a non-judgmental, accepting atmosphere without their loved one, who is living with ALS, being present. Caregivers share a common experience; life has become so tumultuous that they often feel exhausted and overwhelmed, hungry for emotional comfort. Together, with the…
Chicagoland: Third Saturday | 10:30 am - 12:00 pm Video Call-In: zoom.us/j/422596742 Call-In: 312-626-6799, Meeting ID: 422596742 For more information or to RSVP: audrey@alsachicago.org
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.)…
Location: Cinemark Bistro, Meet Andrea Lytle Peet ‘Go On, Be Brave’ is a film about Andrea Lytle Peet’s race against time - a diagnosis of ALS and an attempt at the impossible - to be the first person with ALS to complete a marathon in all 50 states. Trailer
On September 18th, September 29th, and October 10th, from 10:30 AM – 5:30 PM ET, NIH will be hosting a virtual workshop series: “Advancing Endpoints and Digital Health Technologies for Neurological and Neuromuscular Disorders.” The registration information and draft agenda can be found here: https://advancingdigitalendpoints.com/agenda/. Background: Digital endpoints are expected to revolutionize clinical trials…
Meets the Third Tuesday of each month from 1 – 2:30pm Facilitator: Anne Lidsky, PhD Visit: https://lesturnerals.org/support-services/support-groups-education/ to sign up. *Meetings will be held over Zoom and a Zoom invitation will be sent via email once you register for the group.*
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,…
