ALS Research Ambassadors

08/31/2026

We’re seeking a few additional volunteer RAMP mentors to welcome and support new Research Ambassadors from the October 2026 CRLI class.

No previous mentoring experience or specialized ALS research expertise is required—training, practical resources, and ongoing support will be provided.

The commitment is approximately 1–2 hours per month for six months.

Interested? Complete the brief survey: forms.gle/3sdpas9QRF4uxPN28

03/11/2026

Please join us on Thursday, 3/12, at 5:00 pm ET for an expanded access discussion featuring Jinsy Andrews, MD, MSc of NYU Langone Health and representatives from Clene Nanomedicine. They will provide an update to the community on the CNM-Au8 EAP.

Register:
https://mgb-org.zoom.us/webinar/register/WN_JW9rQBhTRFW5uoUIDtJguw #/registration



Northeast ALS Consortium (NEALS) ALS ONE I AM ALS EverythingALS Les Turner ALS Foundation Muscular Dystrophy Association ALS TDI The ALS Association

10/08/2025

Upcoming NEALS Webinar!

Beyond Symptom Management: Exploring Deeper Clinical Implications of Specialty Palliative Care at End-Stage ALS

🗓️ Wednesday, October 15, 2025 | 1:00 PM ET
📍 Registration required

Join us for the upcoming NEALS Community Education Webinar. This webinar examines the role of specialty palliative care in advanced ALS, moving beyond symptom management to address the broader clinical implications of care at the end stage of illness. It highlights how specialty palliative care can improve current practice, support decision-making, and guide people with ALS and their families through advanced illness and into bereavement.

🔗 Register directly here: https://us06web.zoom.us/webinar/register/WN_oRLH7HY-RlyI0CWl_IumMw

NEALS Webinar recording Library & More info: https://neals.org/people-living-with-als/educational-webinars/beyond-symptom-management-exploring-deeper-clinical-implications-of-specialty-palliative-care-at-end-stage-als

This webinar examines the role of specialty palliative care in advanced ALS, moving beyond symptom management to address the broader clinical implications of care at the end stage of illness. It highlights how specialty palliative care can improve current practice, support decision-making, and guide...

10/08/2025

🎉 Congratulations to the newest class of NEALS ALS Research Ambassadors!

What an inspiring group of advocates trained through the ALS Clinical Research Learning Institute® (CRLI) — building knowledge, connection, and impact across the ALS community. 💙

09/29/2025

Still time to register for today’s NEALS webinar! 12:30PM ET.
Learn about COYA 302, a combination biologic immunotherapy being evaluated in the ALSTARS Phase 2 trial for ALS.

🔗 Register now: https://us06web.zoom.us/webinar/register/WN_cBq_Rkw-QS2noQiGRsndMg #/registration

This webinar introduces COYA 302, a novel combination biologic immunotherapy that will be evaluated in the ALSTARS Phase 2 clinical trial for amyotrophic lateral sclerosis (ALS). The presentation will provide an overview of the therapeutic mechanism of action, and attendees will learn about the stud...

07/22/2025

📅 Date: Tuesday, July 29
🕐 Time: 1:00 PM ET
📍 Open to all — registration required
🔗 Register here: https://neals.org/people-living-with-als/educational-webinars/end-of-life-autonomy-a-conversation-on-als-and-medical-aid-in-dying

This webinar will address the broader context of end-of-life autonomy and the unique considerations for those living with ALS.

📅 Date: Tuesday, July 29
🕐 Time: 1:00 PM ET
📍 Open to all — registration required
🔗 Register here: https://neals.org/people-living-with-als/educational-webinars/end-of-life-autonomy-a-conversation-on-als-and-medical-aid-in-dying

07/22/2025

This webinar will address the broader context of end-of-life autonomy and the unique considerations for those living with ALS.

📅 Date: Tuesday, July 29
🕐 Time: 1:00 PM ET
📍 Open to all — registration required
🔗 Register here: https://neals.org/people-living-with-als/educational-webinars/end-of-life-autonomy-a-conversation-on-als-and-medical-aid-in-dying

07/07/2025

Please join us on Thursday, 7/10, at 5:00 pm ET for a brief presentation and Q&A session on Expanded Access Protocols (EAPs). This week, guest speaker Dr. Rick Bedlack of Duke University will be sharing his perspective and experience with EAPs.

Register: https://partners.zoom.us/webinar/register/WN_JW9rQBhTRFW5uoUIDtJguw #/registration

Northeast ALS Consortium (NEALS) ALS ONE I AM ALS EverythingALS Les Turner ALS Foundation Muscular Dystrophy Association ALS TDI The ALS Association

07/03/2025

⏳ Less than a month left to submit your abstract for the 2025 NEALS Annual Meeting! Don't miss this opportunity to share your work with the ALS research community.

We welcome submissions from both NEALS members and non-members. Accepted abstracts will be published in Muscle & Nerve (Wiley) and presented in person through posters, lightning talks, or oral presentations.

📄 View full abstract guidelines and submission details: https://lnkd.in/eNb-aNer
📅 Learn more about the 2025 NEALS Annual Meeting: https://meeting.neals.org

07/02/2025

Still time to apply!

We are excited to announce that applications are now open for the 2025 in-person ALS Clinical Research Learning Institute® (ALS CRLI), taking place October 6–7, 2025, in Clearwater, Florida.

The ALS CRLI is a two-day, immersive program that equips individuals impacted by ALS—including people living with ALS, caregivers, and family members—with the knowledge and tools to engage meaningfully in clinical research and the therapy development process. Participants who complete the program become ALS Research Ambassadors, joining a growing network of advocates working to improve and influence ALS research.

We kindly ask that you share this opportunity with your networks. Eligible applicants must:

-Reside in North America

-Not have attended a previous ALS CRLI program

-Have a connection to ALS

The application deadline is July 14, 2025.

You can learn more at NEALS.org

Apply Here: https://www.surveymonkey.com/r/CRLI2025