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,…
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.)…
2:00pm ET Enjoy the connection and unique perspective of other men living with ALS, male caregivers of persons living with ALS, sons of those with ALS, or any man touched by the disease. We will gather in council to share our experiences with the broad motivation to bring heartfelt connections and healing to the ALS…
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…
3:00pm ET Enjoy the connection and unique perspective of other women living with ALS, female caregivers of persons living with ALS, daughters of those with ALS, or any woman touched by the disease. We will gather in council to share our experiences with the broad motivation to bring heartfelt connections and healing to the ALS…
Please join us on Thursday, September 21st 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 guest speaker Amanda Lee,…
Location: McHenry Outdoor Theater ‘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…
Location: Breck Film Fest, Riverwalk. Meet the Filmmakers ‘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
22nd Annual ALS Walk for Life Kickoff We are thrilled to announce the upcoming 2023 ALS Walk for Life, the largest ALS gathering in the Midwest! This highly anticipated event brings together thousands of individuals, families, and teams who share a common goal of honoring those living with ALS and commemorating the lives of our cherished ones who…
Join John and Tracy Mulligan for a fun 5K run on the C+O Canal Towpath in Georgetown, Washington DC on September 23rd. All proceeds from the registration fees go directly to support I AM ALS.
Location: Paramount, 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
An open, supportive monthly bereavement group for anyone (family, friend, etc.) who has lost a loved one to ALS within the past year. This group will provide a place to connect with others who have experienced the loss of a loved one to ALS; stories will be told, feelings will be explored, and information will…
Questa conferenza riunirà pazienti, organizzazioni di pazienti, industrie (farmaceutiche, biotecnologiche, mediche) e qualsiasi altra parte interessata al coinvolgimento dei pazienti nell'assistenza sanitaria. L’obiettivo dell’evento è quello di ampilare l’interazione diretta e lo scambio tra chi vive una malattia e chi lavora nel settore farmaceutico sviluppando trattamenti e/o soluzioni medico/sanitarie. https://www.conslancio.it/2023/07/26/voce-dei-pazienti-e-caregivers-coinvolgimento-e-collaborazione-nel-settore-sanitario/ https://admedicum.com/networking-pazienti-industrie-2023/
Meet Your ALS Orgs Presentations from Hope Loves Company, MAC Angels, and Roon Tuesday, September 26, 2023 | 3:00 - 4:00pm EDT You are invited to attend our fourth event in the Town Hall series “Meet Your ALS Orgs”. The next event in the series will be held on September 26th at 3 p.m. ET…
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.)…
We will discuss warning signs, how to safeguard, get help, and maintain mental health in people living with ALS/MND and caregivers.
On September 27, 2023, join ALS community members watching the U.S. Food and Drug Administration’s (FDA) AdComm on BrainStorm’s NurOwn. Sign up by filling out this form. Now what’s an AdComm? Good question. AdComm is short for Advisory Committee. These are panels of outside experts that provide advice to FDA, which can be made up…
September 28 2:00pm ET Enjoy the connection and unique perspective of other Veterans living with ALS. We will gather in council to share our experiences with the broad motivation to bring heartfelt connections and healing to the ALS journey. The Veterans gatherings create a safe space to support and be supported without judgement and cultivate…
***If you've signed up already in 2023, there's no need to do it again. You will be added to the calendar invite.*** The seasons may change, but Social Hour remains! Join us on September 28th from 3-4 PM ET to spend time with your fellow advocates. For those who may not know, social hour is…
Please join us on Thursday, September 28th 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, Dr. Paganoni will also present updates on the EAP…
Location: College of Charleston Sottile Theatre, 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
6:30pm ET Join a welcoming group of men and women who have lost a loved one to ALS. Share openly with others who are rebuilding their lives after profound loss. This interactive gathering will highlight where we are now and what may feel different: our identity, our values, our approach to spirituality, and more. We…
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 by enabling…
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…
It's fifteen years since we started the Brigance Brigade Foundation which has helped hundreds of ALS patients and their caregivers. Equip. Encourage. Empower. That's our motto, and it's one that we hope to continue with well into the future. Since this is a landmark year, we've gone all out to make sure it's a memorable experience. There'll…
