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.
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.
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…
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, 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
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,…
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
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
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…
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…