Foundation News

Health-Related Online Survey

We are excited to invite you to participate in an important health-related online survey! Your insights are crucial in shaping our understanding and initiatives. Please take a moment to share your valuable experiences. For those who qualify, the survey should take about 10 minutes to complete. Click the link to get started. Your input matters…

How You Can Manage Fatigue

Submitted by Dr. Gareth Parry, Global Medical Advisory Board Member and GBS Support Group NZ Trust An online activity-focused coaching programme helps reduce fatigue in people after Guillain-Barré Syndrome 60-80% of people with Guillain-Barré Syndrome (GBS) report persistent fatigue which significantly limits everyday functioning despite good recovery of strength. Dr Suzie Mudge who is a…

Research Article: Pathogenesis of GBS based on mice strains

Development of a major histocompatibility complex class II conditional knockout mouse to study cell-specific and time-dependent adaptive immune responses in peripheral nerves Published by: Eroboghene E. Ubogu MD, Jeremy A. Conner BS, Yimin Wang PhD, Dinesh Yadav PhD, Thomas L. Saunders PhD Read the research article here: https://onlinelibrary.wiley.com/doi/10.1002/mus.28193

NEW! Multifocal Motor Neuropathy (MMN) Patient Assistance Program

Multifocal Motor Neuropathy (MMN) Patient Assistance Program NORD’s Multifocal Motor Neuropathy Patient Assistance Program offers eligible individuals diagnosed with MMN financial support to pay for out-of-pocket healthcare costs directly related to the care and treatment of this diagnosis.  Contact info for NORD’s MMN Program:  Phone: 203-263-9484   Email: MMN@rarediseases.org    The quickest way to apply is on…

Speaker Series Summary Episode 7:

Benson Fellowship Research Updates In this episode of our Speaker Series, we dive into the world of science to understand Guillain-Barré Syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) from our Benson Fellowship Awardees Dr. Elba Pascual Goñi MD, PhD, Ruth Huizinga, PhD. Relevant Resources Centers of Excellence: https://www.gbs-cidp.org/support/centers-of-excellence/ Doctor to Doctor Consult: https://www.gbs-cidp.org/doctor-to-doctor/ Find…

Getting Well Outdoors

Ecotherapy Ecotherapy integrates nature-based activities and ecological awareness into therapeutic practices, aiming to enhance mental health by fostering a connection with the environment, whereas regular talk therapy primarily involves verbal discussions in a clinical setting to address psychological issues. The information above was sourced from the Getting Well Outdoors Wellness Webinar. You can find the…

Speaker Series Summary Episode 6:

Current Treatment Options​ for GBS, CIDP, MMN, and Variants In this episode of our Speaker Series, we dive into the world of treatments for GBS, CIDP, and MMN as well as understanding them from Dr. Saperstein, a neurologist on our Global Medical Advisory Board. GBS CIDP MMN Anti-Mag Waiting for FDA Approval Relevant Resources Treatment…

Speaker Series Summary Episode 5:

Navigating Your Health Care Journey In this episode of our Speaker Series, we dive into the world of navigating your health care journey with steps to take, how coverage works, and understanding levels of care with Health Navigator, Amy Stein. Amy is a Licensed Clinical Social Worker and has over 25 years of experience as…

Speaker Series Summary Episode 4:

Pain and Integrative Pain Management Practices In this episode of our Speaker Series, Dr. Linda Bluestein, a board-certified anesthesiologist, integrative pain medicine physician, former ballet dancer, and expert in hyper-mobility disorders, who shares her experience and expertise on pain and pain management through the acronym MENS PMMS. Resources Treatment guidelines – https://www.gbs-cidp.org/gbscidp-guidelines-for-treatment-and-diagnosis/ Treatments & Access…

Speaker Series Summary Episode 3:

How To Be Your Own Advocate In this episode of our Speaker Series, we dive into conversations that patient should have with their doctor from three MMN patients, Pam Stoikopoulos, Richard Sparry, and Clive Phillips. Resources Website Information – What is MMN? Speaker Series Episode – What is MMN? Centers of Excellence – Center for…

Speaker Series Summary Episode 2:

Variants of GBS and CIDP In this episode of our Speaker Series, we talked with Dr. Karissa Gable from Duke University about variants of GBS and CIDP, mimics, its symptoms, and how each are treated. Resources Treatment guidelines – https://www.gbs-cidp.org/gbscidp-guidelines-for-treatment-and-diagnosis/ Treatments & Access page – https://www.gbs-cidp.org/treatments-access/ Centers of Excellence – https://www.gbs-cidp.org/support/centers-of-excellence/ Doctor to Doctor consult…

Speaker Series Summary Episode 1:

What is Multifocal Motor Neuropathy? In this episode of our Speaker Series, we discuss what MMN is with Dr. Michal Vytopil from Beth Israel Lahey Health and Brenda Perales, an MMN patient and volunteer, who share their expertise on the clinical course, diagnosis and progression of MMN, and available treatments and resources for patients. Resources…

Pagination