Go On, Be Brave Screening: LAKEMOOR, IL

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

ALS Office Hours

Virtual

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…

Go On, Be Brave Screening: BRECKENRIDGE, CO

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

Soldier Field 1410 S Museum Campus Drive, Chicago, IL, United States

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…

Towpath Trot – 5k/Fun Run

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.

Go On, Be Brave Screening: CHARLOTTESVILLE, VA

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

Living After Loss (Bereavement Group)

Virtual

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…

Voce Dei Pazienti e Caregivers Coinvolgimento e Collaborazione nel Settore Sanitario

Sala Margherita, Hotel Lombardia viale Lombardia 74, Milan, Italy

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/

Free

ALS TDI Town Hall: Meet Your ALS Orgs!

Virtual

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…

Free

ALS Association Greater Sacramento Chapter Transitions Support Group Meetings

Virtual

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.)…

Free

NurOwn AdComm Watch Event

Zoom

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…

Veterans Living with ALS

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…

September Social Hour

Zoom

***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…

Free

Weekly HEALEY ALS Platform Trial Webinar

Virtual

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…

Free

Go On, Be Brave Screening: CHARLESTON, SC

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

Beyond ALS

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…

Advancing Endpoints and Digital Health Technologies for Neurological and Neuromuscular Disorders: Workshop 2

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…

ALS Office Hours

Virtual

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…

Soiree with O.J.

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…

Literary Salon

Zoom

“Writing is a form of therapy. Sometimes I wonder how all those who do not write, compose, or paint can manage to escape the madness, melancholia, the panic and fear which is inherent in a human situation.” -Graham Greene I AM ALS’ Write Stuff team requests your presence at their first Literary Salon, held on…

Free

22nd Annual NEALS Meeting

2023 Annual NEALS Meeting The 22nd Annual NEALS Meeting will be held October 4 - 6, 2023. Please check back in late Spring for additional details, including information on virtual options.

The Future of Cures… and Coverage: Cell and Gene Therapies

BIO Patient Advocacy Coffee Chat The Future of Cures... and Coverage: Cell and Gene Therapies Wednesday, October 4, 2023 2:00 pm - 3:00 pm ET Please join us for a chat about the science behind gene and cell therapies, and the challenges patients face in accessing these therapies. The recently proposed CMS MDRP rule presents serious concerns around…

Non-Invasive Treatment of ALS Using Motor Neuron Hyperexcitability Suppression

We invite you to join us and other people with ALS and families to engage in a positive setting of collaboration and community.   We are excited to host EverythingALS Community Event:  Non- Invasive Treatment of ALS Using Motor Neuron Hyperexcitability Suppression - Nader Yaghoubi MD , PhD Wednesday, October 4th, 4:00 PM Pacific Standard Time…

Go On Be Brave Screening: University Park, IL

Governors State University Center for Performing Arts 1 University Pkwy, University Park, IL 60484 1 University Pkwy, University Park, IL 60484, University Park, IL, United States

Location: Governors State University 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

5.00

Mothers of ALS

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

Go On Be Brave: Glen Ellyn, IL

Grace Lutheran Church ​493 Forest Ave. Glen Ellyn IL 60137 493 Forest Ave., Glen Ellyn, IL, United States

Location: Grace Lutheran Glen Ellyn 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

15.00

ALS Office Hours

Virtual

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…

Go On Be Brave Screening: Chicago, IL

ShowPlace ICON Theatre & Kitchen at Roosevelt Collection 1011 S Delano Ct Chicago IL, 60605 1011 S Delano Ct., Chicago, IL, United States

Location: ShowPlace ICON 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

10.00