mddsfoundation.org

Mal de Débarquement Syndrome (MdDS) is a neurological disorder that leaves patients feeling as if they are rocking and swaying, as though they are on an invisible boat. The MdDS Foundation describes it as a condition of constant perceived motion. If you have recently been on a car, train, airplane, ship, boat, or even a fast elevator and still feel like you are moving long after you stopped, MdDS is one possibility worth understanding — though only a clinician can diagnose it.

What MdDS Is

MdDS is a disorder of persistent motion perception. The MdDS Foundation frames it as "the natural result of the human brain adapting to environmental motion," which is why it is described as a quintessential neurological disorder. In plain terms: your brain adjusted to motion while you were traveling, and it has not fully readjusted to stillness.

The Foundation's site notes that many people are suffering from MdDS without knowing it — they remain undiagnosed.

Common Triggers

MdDS is typically triggered by motion. According to the MdDS Foundation, triggers include:

• Cars
• Trains
• Airplanes
• Ships and boats
• Fast elevators

The pattern to notice is a trip or motion exposure followed by symptoms that do not resolve on their own.

What the Symptoms Feel Like

The core symptom is a continuous sensation of rocking and swaying — feeling in motion even when you are still. The Foundation's own framing is direct: "Imagine always feeling in motion."

Because symptom intensity varies widely between people, the Foundation offers a visual aid to help others see your symptom severity on a scale from 0 to 10, under the heading "Know Your Numbers." This can be useful when explaining your experience to family, employers, or clinicians who cannot see what you feel.

Why Diagnosis Is Often Delayed

The MdDS Foundation reports that the average person sees 20 or more doctors before receiving a diagnosis. That number is worth keeping in mind if you are early in the process and feel like you are not being understood — a long search is unfortunately common, not evidence that nothing is wrong.

How the MdDS Foundation Website Helps

The site is organized around the practical needs of patients and the people around them:

The Foundation also maintains a global patient registry, which it describes as a way to help answer important questions about the natural history of MdDS. Participating in a registry is one way patients contribute to research that is currently underfunded relative to the scale of the problem.

Research Funding Context

The MdDS Foundation has partnered with the American Brain Foundation to offer the Next Generation Research Grant (NGRG) in Mal de Débarquement Syndrome — a two-year, $150,000 award supporting early-career researchers studying MdDS disease mechanisms or translational research aimed at developing treatments.

What to Do Next

If the description above matches your experience — persistent rocking or swaying after travel that has not settled — the Foundation's explainer video and symptom pages are a reasonable starting point for language you can bring to a doctor. Use the 0-to-10 severity scale to make your symptoms concrete, and consider the support and registry sections if you want to connect with others or contribute to research.

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.

Mal de Débarquement Syndrome (MdDS) leaves people feeling as if they are constantly rocking and swaying, as though they are still on an invisible boat. The MdDS Foundation describes it as a neurological disorder in which the sensation of motion persists long after a voyage or other motion trigger has ended. Life with MdDS can mean years of unexplained symptoms, repeated medical appointments, and the isolation of feeling that no one else understands — which is why the Foundation's patient stories, coping resources, and support-finding tools matter as much as its research efforts.

What MdDS Feels Like Day to Day

The Foundation's core description is simple and worth taking literally: patients feel as if they are rocking and swaying, always in motion. According to the site, MdDS is typically triggered by motion — cars, trains, airplanes, ships, boats, and even fast elevators. That means the onset is often tied to an ordinary event, while the symptoms that follow are not.

Two facts from the Foundation frame how hard the day-to-day reality can be:

• The average person sees 20+ doctors before getting a diagnosis. Many people are suffering from MdDS without knowing they have it.
• The scale of the problem is not matched by research dollars, which the Foundation notes as a gap between how many people are affected and how much funding exists.

For patients, the practical consequence is a long stretch of uncertainty before they even have a name for what they are experiencing.

Patient Stories: What Recovery and Resilience Look Like

The Foundation publishes first-person accounts through its blog and "Faces of MdDS" series. Two examples show the range of what patients describe.

Dakota's story — "Finding My Footing: How I Regained Control After an MdDS Diagnosis." The Foundation describes this as a deeply personal story of resilience and recovery, and notes that Dakota shares what helped him the most and offers hope. The emphasis is on regaining a sense of control after diagnosis rather than on a single cure.

Debbie Whitmer's poem — "My Poem For MdDS Sufferers." Whitmer had been living with MdDS for eight years when she contributed the poem, which the Foundation frames around empathy, understanding, and hope within the MdDS community. It opens with the line "If people only knew what this pain feels like..." — a direct expression of the isolation many patients report.

These accounts are useful less as treatment guidance than as evidence that others have walked the same path. If you are newly diagnosed, reading them can answer the question "is this only happening to me?" before you look for anything else.

Coping Tips and Support-Finding on the Site

The Foundation organizes its patient-facing content into a few clear areas:

The site also offers a visual aid to help others see your symptom severity on a scale from 0 to 10 (labeled "Know Your Numbers"). This is a practical tool for the common problem of explaining an invisible illness to family, friends, or employers — a number is easier for others to grasp than a description of swaying.

Research and Registry Opportunities

For patients who want to contribute to answers rather than only seek them, the Foundation highlights two programs:

• Next Generation Research Grant (NGRG). The MdDS Foundation has partnered with the American Brain Foundation to offer this grant in MdDS. It is a two-year, $150,000 award designed to support and encourage early-career researchers studying MdDS disease mechanisms or translational research specifically aimed at developing treatments.
• Global patient registry. The Foundation describes this as a registry that will help find answers to important questions about the natural history of MdDS.

Participating in a registry is one way patients turn their own experience into data that researchers can use — particularly relevant given the Foundation's point that research funding has not matched the scale of the problem.

How to Get Involved

The Foundation's content invites patients to read the blog, share their own stories, and engage with the community. If you are living with MdDS, the most direct starting points are the Coping Tips and Find Support sections, followed by the patient stories if you want to hear from people further along. If you want to contribute to research momentum, the registry and the NGRG announcement are the two entry points the site currently highlights.

mddsfoundation.org is the website of the MdDS Foundation, a nonprofit focused on Mal de Débarquement Syndrome (MdDS) — a neurological disorder that leaves patients feeling as if they are rocking and swaying, "as if on an invisible boat." The site is an information and support hub for patients, families, and clinicians, not a store or transactional platform. If you are trying to understand what MdDS is, find diagnostic or coping information, or connect with research and patient-community resources, this is the organization's main public entry point.

What the site covers

The site organizes its content around the patient journey, from first symptoms to living with the condition:

• About & FAQ — an overview of the disorder and common questions
• Symptoms — what the condition feels like, including a visual aid for rating symptom severity on a 0–10 scale ("Know Your Numbers")
• How to Diagnose — guidance on the diagnostic process
• Living with MdDS and Coping Tips — practical day-to-day management
• Find Support — community and peer connections
• Professional Resources — material aimed at clinicians and researchers
• Latest Research — updates on studies and findings

There is also an explainer video and a "Faces of MdDS" section featuring patient stories, plus a blog with announcements, research news, and first-person accounts.

Research and patient data

Two features distinguish the site from a general health-information page:

• Global patient registry — described as a way to help answer important questions about the natural history of MdDS.
• Next Generation Research Grant (NGRG) — offered in partnership with the American Brain Foundation. The site describes it as a two-year, $150,000 award supporting early-career researchers studying MdDS disease mechanisms or translational research aimed at developing treatments.

Facts the site emphasizes

The foundation frames MdDS as under-recognized and underfunded:

• It is typically triggered by motion — cars, trains, airplanes, ships, boats, and even fast elevators.
• The average person sees 20 or more doctors before receiving a diagnosis.
• Many people have MdDS without knowing it, and the scale of the problem is not matched by research dollars.

The site quotes Yoon-Hee Cha, MD, describing the MdDS phenomenon as "the natural result of the human brain adapting to environmental motion" and "the quintessential neurological disorder."

Who it is for

What it is not

The site does not sell products or services, and the available page information shows no pricing, payment platforms, or e-commerce signals. It functions as an educational, advocacy, and community resource. If you are looking for a diagnosis or treatment decisions, the site's diagnostic and professional sections are starting points for conversations with a qualified clinician rather than a substitute for care.

MdDS (Mal de Débarquement Syndrome) is a neurological disorder that leaves people feeling as if they are rocking and swaying, as though they are still on a boat. There is no single test that confirms it, and the average person sees more than 20 doctors before receiving a diagnosis. The MdDS Foundation website (mddsfoundation.org) is built to shorten that path: it explains the disorder, points to professional resources and diagnosis information, and connects patients to support, coping tips, and a global patient registry. Use it as a starting point for understanding your symptoms and preparing for medical appointments — not as a substitute for a clinician's evaluation.

What MdDS Is and Why Diagnosis Is Hard

MdDS is typically triggered by motion — cars, trains, airplanes, ships, boats, and even fast elevators. The persistent sensation of movement continues after the motion stops, which is what separates it from ordinary motion sickness.

The Foundation describes it as "the quintessential neurological disorder," a natural result of the human brain adapting to environmental motion. Because there is no obvious physical injury and the symptoms are subjective, many people are suffering from MdDS without knowing they have it — they remain undiagnosed. That gap is why the site emphasizes awareness and research funding as much as patient support.

How to Approach Getting a Diagnosis

The Foundation does not publish a step-by-step diagnostic protocol on its site, but its resources are organized around the questions a clinician will ask. A practical way to use them:

1. Learn the symptom picture first. Read the "About & FAQ" and "Symptoms" sections so you can describe your experience in specific terms — rocking, swaying, a sense of constant motion — rather than vague dizziness.
2. Review the diagnosis information. The "How to Diagnose" page under Professional Resources is written for clinicians, but reading it helps you understand what a doctor is looking for and what distinguishes MdDS from other balance disorders.
3. Bring the severity scale to your appointment. The Foundation offers a visual aid that lets you show others your symptom severity on a scale from 0 to 10 ("Know Your Numbers"). A number is easier for a doctor to track over time than a description, and it gives you a concrete way to report change between visits.
4. Expect multiple consultations. Given the 20+ doctor average, treat early appointments as a process of ruling out other conditions rather than expecting an immediate answer.

If you are a clinician or researcher, the same site collects professional resources and the latest research in one place.

Support and Coping Resources on the Site

Once you have a name for what you are experiencing, the Foundation's patient-facing sections cover the practical side of living with it:

• Living with MdDS and Coping Tips — day-to-day management strategies.
• Find Support — ways to connect with others who have the condition.
• Faces of MdDS — first-person accounts, including "Finding My Footing: How I Regained Control After an MdDS Diagnosis," in which Dakota describes what helped him most, and a poem by Debbie Whitmer, who has lived with MdDS for eight years, written to build empathy and understanding.
• Explainer video — a short overview for sharing with family, friends, or employers who may not understand the condition.

These stories are personal experience, not clinical guidance, but they are useful for two things: recognizing that your symptoms are not unique, and finding language to explain them to people around you.

Contributing to Research: The Patient Registry

The Foundation runs a global patient registry designed to answer important questions about the natural history of MdDS — how it starts, how it changes, and what happens over time. If you have been diagnosed, joining the registry is one of the few concrete actions available to you that can help move research forward, since the scale of the problem is not matched by research dollars.

The Foundation has also partnered with the American Brain Foundation to offer the Next Generation Research Grant (NGRG) in MdDS — a two-year, $150,000 award supporting early-career researchers studying disease mechanisms or developing treatments.

What the Site Cannot Do

The website provides information, resources, and community — it does not diagnose, treat, or prescribe. Diagnosis still depends on a qualified clinician evaluating your history and ruling out other causes. Use the site to prepare for that evaluation, to track your symptoms in a form a doctor can use, and to find people who understand what you are going through.