Foundation News

Tour de MMN Community Meet-ups

Be Part of the Tour de MMN – Local Meet-Ups to Support a Global Cause Join us for a Tour de MMN Community Meet-Up, a series of special gatherings to support Clive Phillips, Multifocal Motor Neuropathy (MMN) Patient and his team as they embark on an extraordinary cycling journey inspired by the 1955 Tour de…

Speaker Series, Mental Health and Integrated Care for the GBS|CIDP Community

Living with Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN), or related conditions can take a toll on both physical and mental well-being. While treatment often focuses on managing neurological symptoms, the impact on mental health is equally important. Join us for this insightful webinar exploring the connection between neurological conditions…

Leadership Collaborative

The first biennial GBS|CIDP Foundation Leadership Collaborative convened in Boston! Every two years, the Foundation will bring together leadership from our Global Medical Advisory Board and other key experts to address emerging challenges that disrupt the treatment, care, or innovation in GBS, CIDP, and MMN. This year’s Collaborative began by listening to patients. In an initial meeting,…

From Paralysis to Purpose

From paralysis to purpose — Shane Sumlin’s inspiring journey through GBS is a powerful reminder of resilience and hope. Now a GBS|CIDP Foundation board member, he’s turning his experience into advocacy to help others facing this rare disease. Thank you to KTBS News for sharing his story! Read more about his story on the KTBS…

Symposium Patient Scholarship

Patient Scholarship Application Now Open! We’re excited to offer a limited number of Patient Scholarships for our 2025 Denver, Colorado Symposium, made possible by the generosity of our industry partners! Each scholarship provides up to $1,000 USD in reimbursable funds to help cover your travel and hotel accommodations for the event. Recipients are responsible for…

Phase 2 Study of IV NVG-2089 in CIDP Patients

A Phase 2, Open-label Study to Evaluate the Safety, Tolerability, and Efficacy ofIntravenous NVG-2089 in Participants with Chronic Inflammatory DemyelinatingPolyneuropathy (CIDP) The purpose of the study is to evaluate the safety of NVG-2089 and to evaluate how well patients respond to this investigational treatment. NVG-2089 is a new drug that is being developed for treating…

Aging and Guillain-Barré syndrome: Understanding Typical Aging vs. Residual Effects of GBS

Speaker Series Summary Episode 18: In this episode of our Speaker Series, we dive into what a person might feel as a result of GBS residuals and what that person might feel is normal aging, how to tell the difference, and what to do about these symptoms with University of Pennsylvania neurologist Dr. Chafic Karam….

Empassion Study for MMN

A Phase 3, Randomized, Double-Blinded, Double-Dummy Study Evaluating the Efficacy and Safety of Empasiprubart Versus Intravenous Immunoglobulin in Adults with Multifocal Motor Neuropathy A Study to Assess the Efficacy and Safety of Empasiprubart Versus IVIg in Adults with Multifocal Motor Neuropathy (Empassion) The main purpose of this study is to compare empasiprubart and IVIg in…

Foundation at 2025 AANN Conference!

Thank you to the AANN (American Association of Neuroscience Nurses) for inviting us to share patient stories, Foundation resources & support for the Neuroscience Nurse Community! Maureen Neville and Morgan Duhe joined patient advocates, Jessica Schexnayder and Julie Belle, at AANN 2025, for a panel discussion on the patient journey of CIDP & MMN, and the many…

Nancy DiSalvo Participates in Neuromuscluar Disease Day, Italy

On Saturday 22 March 2025 Neuromuscular Diseases Day, Director of International Affairs, Nancy DiSalvo represented the Foundation at an event held simultaneously in 19 Italian cities. Many healthcare and legislative were represented with the participation of authorities, ASP management, expert neurologists, physiotherapists, patients and patient associations. Special thanks to Dr. Marcello Romano and the Center…

Pediatric CIDP Patients for a Clinical Research Study

Has Your Child been diagnosed with CIDP? Octapharma is seeking Pediatric patients for a clinical research study (NGAM-11) to access two different IVIg doses in the treatment of CIDP For US Audience Only Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare disease where the body’s natural defenses, like antibodies, attack the covering of the nerves,…

The urgent need for better treatments for Guillain-Barré Syndrome

“Our family was profoundly affected by Guillain Barre Syndrome in 2001 and now I am humbled by the work we do and the patients we serve. We still need stronger awareness for quicker diagnosis and additional treatments for improved recovery!” – Lisa Butler, President and CEO of the GBS|CIDP Foundation International Read Article: https://www.northjersey.com/story/opinion/2025/03/16/we-urgently-need-better-guillain-barr-syndrome-treatments-opinion/82234315007/

New Insights into Diagnosis, Treatment, and Disability in People Living with Guillain-Barre Syndrome

Publication: Practical Neurology (Wayne, PA) Headline: New Insights into Diagnosis, Treatment, and Disability in People Living with Guillain-Barre Syndrome To read the article, visit https://practicalneurology.com/news/new-insights-into-diagnosis-treatment-and-disability-in-people-living-with-guillain-barre-syndrome

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