This speaker series will highlight the mission and impact behind our Foundation-funded grants program, exploring why we invest in research and how research funding drives progress for patients and families affected by rare and immune-mediated neurological conditions such as GBS, CIDP and MMN. The session will showcase how targeted research funding advances scientific discovery, improves diagnosis and care, and builds a stronger evidence base for treatment and long-term outcomes.
Participants will gain insight into the importance of sustained research investment, the types of projects we support, and how foundation-funded research helps bridge critical gaps not always addressed by traditional funding sources. This webinar is ideal for patients, caregivers, clinicians, researchers, and advocates interested in understanding the value and real-world impact of research funding.
Introduction
Dr. Ruth Huizenga: N Erasmus MC Rotterdam, Netherlands Discovery Grant Recipient
Dr. Shoma Hayat — icddr,b, Bangladesh, Elevation Grant Recipient
Dr. Claire Johnson Institution: University of Oxford, Benson Fellowship Grant Recipient
Describe the types of grants funded by the GBS|CIDP International Foundation.
The grant funding program is guided by our Global Medical Advisory Board (GMAB) with peer review and anonymous scoring much like the National Institute of Health (NIH) process.
The foundation wards 3 types of grants:
Elevation Grant: Is a small seed grant intended to support initial project development. The awardee receives $50k for one year study
Discovery Grant: Aimed at exploring new concepts or directions from established investigators with a proven track record; these are high-risk, high-impact proposals. The awardee receives $100k for each of two years
Benson Fellowship: Is a three-year fellowship that provides an opportunity for talented scientists to engage in peripheral nerve of study. The awardee receives $150k for each of three years
About Dr. Ruth Huizenga’s Research
Biomarker Study:
- Investigates proteins involved in connecting myelin (nerve insulation) to the axon (nerve core)
- Expands beyond existing biomarkers that primarily measure axonal damage
- Examines how these markers relate to disease severity, recovery, and prognosis
- Early findings revealed unexpected decreases in certain biomarkers in specific patient subgroups, particularly those with equivocal nerve conduction results
Genetics Study:
- Moves beyond single-gene analysis to whole-genome investigation
- Uses large international cohorts, including IGOS (International GBS Outcome Study)
- Aims to identify genetic variations that predispose individuals to GBS and influence outcomes
- Supports development of future prognostic models that combine clinical data with biological markers
Why This Matters:
- Helps explain why patients experience different disease courses
- Supports earlier risk stratification
- Builds the foundation for personalized treatment strategies
- Strengthens global biobanking and international collaboration
About Dr. Shoma Hayat’s research
Study Components:
- Whole-genome sequencing to identify variants associated with IVIG treatment response
- Analysis of polymorphisms, insertions/deletions, copy number variations, and splice variants
- Examination of pharmacogenomic genes related to drug metabolism, immune pathways, and antibody receptors
- Investigation of genetic markers linked to disease severity and recovery
Clinical Motivations:
- Many patients in low- and middle-income countries experience severe disease and limited access to advanced care
- A significant percentage require mechanical ventilation
- IVIG is costly and limited in availability, making prediction of response critically important
Why This Matters:
- Enables identification of predictive biomarkers for IVIG responsiveness
- Supports development of biomarker-guided care pathways
- Helps clinicians avoid ineffective treatments
- Advances equitable, personalized care—especially in underserved regions
About Dr. Claire Johnson’s research
Key Discoveries:
- Identification of IgN antibodies in patients previously thought to have IgG-mediated disease
- Evidence that these antibodies may be present at significantly higher levels in certain patients
- Discovery suggests a subset of patients may be missed during routine diagnostic testing
Current Research Focus:
- Characterizing B-cell populations responsible for producing harmful antibodies
- Tracking immune signatures over time to understand relapse after rituximab
- Studying genetic sequencing of B cells to identify disease-driving patterns
- Exploring additional therapeutic targets, including complement inhibitors
Why This Matters:
- Enables faster, more accurate diagnosis
- Reduces delays in effective treatment
- Helps prevent irreversible disability
- Opens pathways for precision medicine and new drug development
What research gaps are being addressed?
- Biomarkers & Genetics (Dr. Huizenga): Current biomarkers focus mainly on axonal damage. This research explores myelin–axon connections and whole-genome approaches to better predict disease severity and outcomes.
- IVIG Non-Responsiveness (Dr. Hayat): Up to 40% of GBS patients do not respond to IVIG. This work investigates genetic variants that may explain treatment resistance and disease severity, particularly in low-resource settings.
- Missed Diagnoses & Antibodies (Dr. Johnson): Some patients with autoimmune neuropathies may be misdiagnosed due to limited antibody testing. Identifying additional antibody types could lead to faster diagnosis and more effective treatment.
How does this research improve quality of life?
- Earlier and more accurate diagnosis
- Better prediction of disease severity and recovery
- More personalized treatment strategies
- Reduced risk of long-term disability
Why is the GBS|CIDP Foundation International’s funding critical?
- Supports early-career researchers and innovative ideas
- Enables international collaboration for rare diseases
- Provides flexibility to pursue high-risk, high-impact research
- Makes research possible in under-resourced regions
How does collaboration strengthen rare disease research?
- Expands patient cohorts across countries
- Shares data, technology, and expertise
- Connects laboratory discoveries to real-world treatments
- Builds a global research ecosystem for rare neurological diseases
Personal Reflections from Researchers
Panelists shared that foundation funding:
- Helped them remain in research careers
- Enabled work that would not be funded through traditional mechanisms
- Allowed them to translate personal motivation into meaningful patient impact
Message to Patients, Caregivers, and Advocates
- Research funding directly impacts patient outcomes
- Community engagement and trust in science are essential
- Participation in registries, studies, and advocacy helps move research forward
Final takeaways!
- Foundation-funded research is advancing earlier diagnosis, personalized treatment, and better outcomes for GBS, CIDP, and MMN.
- Innovative studies are closing critical gaps in biomarkers, genetics, and treatment response.
- Global collaboration accelerates discovery and strengthens rare disease research.
- Targeted funding empowers scientists to pursue high-impact ideas that translate directly to patient care.
- Patients and caregivers remain essential partners in moving research forward.
Spotlight
