Mal de Debarquement Syndrome (MdDS) Balance Disorder Foundation

06/12/2026

"I tell my friends that I used to feel at peace in nature and in the water. Now 𝙄 𝙖𝙢 nature, water and 𝙩𝙝𝙚 𝙨𝙩𝙤𝙧𝙢."

This image is an AI interpretation of artist Liessa Clarkson’s original sketch. It captures our reality perfectly—some days are so much harder than others. But with 𝗿𝗲𝘀𝗶𝗹𝗶𝗲𝗻𝗰𝗲, we stand strong and face the storm.

Many in our community are even facing the elements and challenging MdDS with, “Is that all you got?!” Because that’s how strong you are. 💪

Art has the power to make the invisible visible. If you are creative and living with MdDS, you can use your art to drive advocacy and public impact. Turn your experience into action by entering the EveryLife Foundation's competition.

Submitting is a great way to participate in MdDS Awareness Month.
The deadline is approaching quickly. 🔗Link for information is in the bio or https://everylifefoundation.org/rare-artist/

06/04/2026

Thank you, Dr. Sharpe! This level of clinical discussion is a step forward for the . Your fair and thorough analysis of current Mal de Débarquement Syndrome (MdDS) treatments and research studies helps move the conversation forward in a genuinely meaningful direction.

📣 It is wonderful to see others actively participating in MdDS Awareness Month as well. your voice matters! 𝗣𝗹𝗲𝗮𝘀𝗲 𝗿𝗲𝗮𝗱 𝗮𝗻𝗱 𝗦𝗛𝗔𝗥𝗘 to help raise this June!

�

June is MdDS Awareness Month, and we want to mark it with something genuinely useful.

If you or someone you love has been living with a persistent sensation of rocking, swaying, or bobbing long after a voyage or flight ended, you may have heard the words "sea legs" more times than you can count. You may have been sent to the wrong specialists, tried treatments that made no difference, and wondered whether anyone truly understands what you are experiencing.

They do. And the right help exists.

This month, Dr Margie Sharpe has published two articles to help cut through the confusion.

The first is written for you. It explains what prolonged MdDS actually is, why it is so frequently misdiagnosed, what the evidence-based treatment looks like, and what questions to ask when you are looking for the right clinician.

The second is written for health professionals, so that the people treating you are asking better questions too.

Both are on the website now. Read them, share them with someone who needs them, and know that persistence in finding the right care is never wasted.

https://dizzinessbalancedisorders.com.au/still-rocking-after-the-voyage-ended-what-you-need-to-know-about-prolonged-triggered-mal-de-debarquement-syndrome/

https://dizzinessbalancedisorders.com.au/when-the-gold-standard-is-not-enough-what-a-patients-journey-taught-me-about-venous-compression-and-prolonged-mdds/

Please consider sharing this post and these articles with any people who might benefit.

06/02/2026

We couldn't have said it better! THANK YOU FOR SHARING. 🩵💙🩵

Mal de Débarquement Syndrome (MdDS) is a neurological disorder that...

05/26/2026

Designed with You in Mind—the MdDS Symptom Severity Scale and Symptom Tracker were created to help you manage life with MdDS more effectively.

👩🏻‍🔬 These free tools can provide a tangible record to share with healthcare providers, turning your felt experiences into physical information they can use.

Simply use the scale and log to monitor symptoms and modifiers—what increases or decreases your perceived movement.

By recording levels of perceived movement and modifiers—like weather or stress—you can connect the dots of your daily experience, see monthly averages, and build your “big picture”.

With your panoramic view, 𝘆𝗼𝘂 𝗮𝗿𝗲 𝗲𝗺𝗽𝗼𝘄𝗲𝗿𝗲𝗱 𝘁𝗼 𝗺𝗼𝘃𝗲 𝗯𝗲𝘆𝗼𝗻𝗱 𝗱𝗮𝗶𝗹𝘆 𝘀𝘂𝗿𝘃𝗶𝘃𝗮𝗹 𝘁𝗼𝘄𝗮𝗿𝗱𝘀 𝗯𝗲𝘁𝘁𝗲𝗿 𝗺𝗮𝗻𝗮𝗴𝗲𝗺𝗲𝗻𝘁.

🖨️ 𝗗𝗼𝘄𝗻𝗹𝗼𝗮𝗱 𝗮𝗻𝗱 𝗽𝗿𝗶𝗻𝘁: mddsfoundation.org/resources

04/30/2026

Designed with You in Mind—the MdDS Symptom Severity Scale and Symptom Tracker were created to help you manage life with MdDS more effectively.

By recording levels of perceived movement and modifiers—like weather or stress—you can connect the dots of your daily experience and build your “big picture”.

Simply use the scale and log to monitor symptoms and modifiers—what increases or decreases your perceived movement.

With your panoramic view, 𝘆𝗼𝘂 𝗮𝗿𝗲 𝗲𝗺𝗽𝗼𝘄𝗲𝗿𝗲𝗱 𝘁𝗼 𝗺𝗼𝘃𝗲 𝗯𝗲𝘆𝗼𝗻𝗱 𝗱𝗮𝗶𝗹𝘆 𝘀𝘂𝗿𝘃𝗶𝘃𝗮𝗹 𝘁𝗼𝘄𝗮𝗿𝗱𝘀 𝗯𝗲𝘁𝘁𝗲𝗿 𝗺𝗮𝗻𝗮𝗴𝗲𝗺𝗲𝗻𝘁. ��

👩🏻‍🔬 These free tools also provide a tangible record to share with healthcare providers, turning your felt experiences into physical information they can use.

🖨️ 𝗗𝗼𝘄𝗻𝗹𝗼𝗮𝗱 𝗮𝗻𝗱 𝗽𝗿𝗶𝗻𝘁: mddsfoundation.org/resources

04/27/2026

You left so many birthday messages for Marilyn, we had to make an oversized card to fit them all! You also showed incredible support through your actions. In honor of Marilyn’s 90th birthday, this community raised over $900! THANK YOU. 💙🩵

Donations like these are critical to our mission. They support on-going research, the upcoming MdDS Patient Registry (also research), and other critical initiatives. 🩵💙 If you haven't had a chance to donate, it's not too late!

04/18/2026

We've created free tools to help you track symptom levels and modifiers (things that increase or decrease symptom severity). The MdDS Symptom Severity Scale and tracking log may help you connect the dots.
https://mddsfoundation.org/wp-content/uploads/2026/04/MdDS-Symptom-Tracker-analog.v1.pdf

04/17/2026

🎉 On Sunday, we celebrate a milestone birthday for a woman who changed the future for the .

Marilyn Josselyn founded the MdDS Foundation nearly two decades ago when information on the disorder was almost non-existent. Today, because of her persistence, we have peer-reviewed literature, ongoing research, and a vibrant community of “Rockers” who no longer have to feel alone.

𝗧𝗼 𝗵𝗼𝗻𝗼𝗿 𝗠𝗮𝗿𝗶𝗹𝘆𝗻’s 90 years, we are focusing on "doing." You can help move the needle by contributing to support our 2026 research initiatives. Let’s ensure the next decade brings even more breakthroughs and milestones.

𝗣𝗹𝗲𝗮𝘀𝗲 𝗺𝗮𝗸𝗲 𝗮 𝗱𝗼𝗻𝗮𝘁𝗶𝗼𝗻! Whether $𝟵 or $𝟵𝟬 𝗶𝗻 𝗠𝗮𝗿𝗶𝗹𝘆𝗻’𝘀 𝗵𝗼𝗻𝗼𝗿 — every dollar helps cover the Foundation’s recurring costs like our website and upcoming MdDS Patient Registry.

💙 Use the Donate button or go to https://mddsfoundation.org/donate/

🥳 Happy 90th Birthday, Marilyn! Thank you for your unwavering leadership.

04/16/2026

𝗖𝗲𝗹𝗲𝗯𝗿𝗮𝘁𝗶𝗻𝗴 𝟵𝟬 𝗬𝗲𝗮𝗿𝘀 𝗮𝗻𝗱 𝗮 𝗟𝗲𝗴𝗮𝗰𝘆 𝗼𝗳 𝗔𝗱𝘃𝗼𝗰𝗮𝗰𝘆 🎉 Board President and Foundation founder, Marilyn Josselyn, is celebrating her 90th birthday!

In 1998, after a cruise turned into a lifetime of rocking and swaying, Marilyn found a medical community that lacked answers. Rather than accepting the status quo, she and her husband, Roger, began a crusade for awareness. Their efforts led to the formal recognition of MdDS in the World Health Organization (WHO)’s ICD-10 in 2004—a pivotal moment that provided a diagnostic foothold for patients globally.

Under Marilyn’s leadership, the Foundation has grown from a four-person committee to a 501(c)(3) supporting two ongoing research studies and a global patient registry.

🔊 𝗛𝗼𝘄 𝘁𝗼 𝗛𝗼𝗻𝗼𝗿 𝗠𝗮𝗿𝗶𝗹𝘆𝗻’𝘀 𝟵𝟬𝘁𝗵: Marilyn’s goal has always been to convert awareness into action. To celebrate this milestone, we invite you to support the research she helped pioneer. Your donations directly fund the recurring costs of our patient registry, IRB oversight, and biomedical research grants.

🎁 Donations in her honor can be made using the Donate button or at https://mddsfoundation.org/donate/

𝗣𝗹𝗲𝗮𝘀𝗲 𝗷𝗼𝗶𝗻 𝘂𝘀 𝗶𝗻 𝘄𝗶𝘀𝗵𝗶𝗻𝗴 𝗠𝗮𝗿𝗶𝗹𝘆𝗻 𝗮 𝘃𝗲𝗿𝘆 𝗵𝗮𝗽𝗽𝘆 𝗯𝗶𝗿𝘁𝗵𝗱𝗮𝘆 𝗶𝗻 𝘁𝗵𝗲 𝗰𝗼𝗺𝗺𝗲𝗻𝘁𝘀! 🥳