What Research and Patient Registry Opportunities Does the MdDS Foundation Offer?

The MdDS Foundation supports research in two main ways: it co-funds a grant for early-career researchers through the American Brain Foundation, and it runs a global patient registry designed to answer questions about how MdDS develops and changes over time. If you are a researcher, the grant is the relevant entry point; if you are a patient, the registry is the way to contribute data. The site also notes that research funding for MdDS is not matched to the scale of the problem, and it publishes research announcements and patient stories on its blog.

The Next Generation Research Grant (NGRG)

The MdDS Foundation has partnered with the American Brain Foundation (ABF) to offer the Next Generation Research Grant in Mal de Débarquement Syndrome.

Key details as described on the site:

• Award size and duration: a two-year, $150,000 award.
• Purpose: to support and encourage early-career researchers.
• Scope of work: studying MdDS disease mechanisms, or translational research specifically designed to develop treatments for MdDS.

The stated intent is to bring new researchers into the field rather than only fund established investigators. If you are an early-career researcher working on MdDS mechanisms or treatment development, this is the funding route the foundation highlights.

The Global Patient Registry

The foundation describes a global patient registry intended to help find answers to important questions about the natural history of MdDS — that is, how the condition begins, how it progresses, and how it varies across patients over time.

For patients, this is the main way to participate in research without joining a clinical trial. The site presents it as a data-collection effort: individual experiences, gathered at scale, become the evidence base that researchers can analyze. You can find the registry through the "Learn About the Registry" link on the site.

Why the Foundation Emphasizes Research Participation

The site makes a direct argument for why both the grant and the registry matter:

• MdDS is typically triggered by motion — cars, trains, airplanes, ships, boats, and even fast elevators.
• The average person sees 20+ doctors before getting a diagnosis, which means many cases are never counted in research.
• Many people have MdDS and don't know it, so they remain undiagnosed.
• The scale of the problem is not matched by research dollars.

The foundation frames MdDS as "the quintessential neurological disorder" — in the words of Yoon-Hee Cha, MD, quoted on the site, it is "the natural result of the human brain adapting to environmental motion." That framing is part of the case for why the condition deserves more research attention and why patient-reported data is valuable.

What Else the Site Offers Around Research

Beyond the grant and registry, the site maintains a blog that publishes:

• Research and announcement posts, including updates on the Next Generation Research Grant.
• Patient stories, such as first-person accounts of diagnosis and recovery, and a poem written by a patient living with MdDS for eight years.

These posts serve a dual purpose: they keep the community informed about research progress, and they document patient experience in a form that can complement formal research.

How to Decide Where You Fit

The foundation's overall message is that both funding and participation are needed: research dollars to study the disorder, and patient data to make that research possible.