June 2024 Newsletter – Did You Miss It?

This is a modified version of the newsletter released on June 27, 2024. Newsletters are not normally reformatted as blog posts. But this edition covers a great deal of important information that you must not miss. An easy 6-minute read, we encourage you to read this newsletter top-to-bottom.

MdDS Foundation Funded Research

A collaborative research effort between the University of California San Diego and the Naval Medical Centers in San Diego, CA, and Portsmouth, VA, aims to examine the relationship between specific types of motion exposure and symptoms associated with Mal de Débarquement Syndrome. The primary objective of this study is to construct a predictive model for MdDS onset. Through the identification of precise motion triggers, the research endeavors to facilitate the development of targeted prevention and treatment strategies.

Principal Investigator: Akihiro J. Matsuoka, MD, DMSc, PhD, FACS

Director, Balance and Vestibular Program

Associate Professor
, Department of Otolaryngology-Head and Neck Surgery, University of California San Diego

Group photo at the UCSD Mal de Débarquement Syndrome Center for Treatment and Research, at the Perlman Clinic. The clinical portion of this center is expected to be operational by Fall 2024.

Vestibular Physical Therapy Using Sensory Re-weighting in Mal de Débarquement Syndrome

This IRB-approved, clinical research project is focused on the use of enhanced sensory feedback to reduce the symptoms of MdDS. The experimental approach reflects the fact that maintenance of balance and upright alignment occurs through sensory information derived from vestibular, visual, and somatosensory (including proprioception) systems. Studies are underway, however, patient recruitment is currently closed to enrollment.

South Valley Physical Therapy, Denver, CO

Co-Principal Investigators:
 Sarah Gallagher, PT, DPT, NCS
Chelsea R. Van Zytveld PT, DPT

Patricia Winkler, PT, DSc, NCS (emeritus)

SVPT investigators, Chelsea, Sarah, and Patricia.

Clinical Research Training Scholarship (CRTS)

The MdDS Foundation and American Brain Foundation (ABF) in collaboration with the American Academy of Neurology (AAN) is hoping to support a new Clinical Research Training Scholarship. The two-year award totaling $150,000 is intended to encourage early career investigators to pursue clinical studies on Mal de Debarquement Syndrome and Central Vestibular Neurological Disorders.

The application period is already open for the 2025 award. And we need your help in spreading the word! Please share this announcement with the offices and clinics of your health care providers. This is especially important if they are associated with an academic (university) program. Ask your health care professionals to help in our search for early career investigators who might be interested in MdDS research training. Finding the cure for MdDS depends on it, and you!

MdDS Patient Registry

The MdDS Foundation is developing a new, global patient registry that aims to aid in finding answers to important questions about the natural history of MdDS. Using the IAMRARE® platform powered by the National Organization for Rare Disorders (NORD®), the MdDS Patient Registry will gather information through validated surveys and custom questionnaires. Deidentified patient data will help researchers explore potential treatments or launch clinical trials. Similarly, aggregated patient data will be analyzed to inform healthcare providers of information to improve standards of care. In addition, patients will have the opportunity to be notified about MdDS clinical trials as well as view their data in comparison to others within the registry. Learn more about the IAMRARE® program and be on the lookout for information about the Mal de Debarquement Syndrome Patient Registry in the near future.

An Even Better Website

We made it easier to find what matters to you on mddsfoundation.org. Better navigation menus. Reorganized content. New pages! The Share Your Story page is popular and ready for patients and caregivers alike. Give it a try today.

We’re making it easier for professionals to find what matters to them. Medical professionals will find new pages, too, with everything they need to know about MdDS. The Research and Biomedical Literature pages will have added functionality, with robust filtering and sorting options. These upgrades are coming to the Professionals area of our website soon. Meanwhile, they are enjoying a version of this newsletter, written just for them.

This is your donations at work! A 501(c)3 nonprofit since 2007, a donation today helps us continue this critical work.

Wrapping Up…

While we work hard year-round, focusing outreach efforts during MdDS Awareness Month (June) is an effective way to raise public awareness. More than a dozen MdDS patients helped by sharing their personal stories. You’ll find many #mddsJAM posts on both Facebook and Instagram. Adding their voice to ours, they fostered an understanding of MdDS and its life-altering impact with amplified results. First-time visitor traffic to mddsfoundation.org this quarter is up over 23%! Our Facebook posts during June were shared by Patient Worthy, a rare disease advocacy organization with over 11,000 followers, and the American Brain Foundation, 98K followers, which promotes and invests in research across the whole spectrum of brain disease. See the Faces of MdDS and read their stories on our blog. As part of the website improvements, the blog can now be found under the new READ OUR NEWS+ menu on our home page.

MdDS Brochure and Knowledge Card – SO NEW they’re not even here from the printer yet!

New patients and health care providers alike will learn a great deal about MdDS from our professionally designed brochures. Clinicians especially appreciate the quick-reference knowledge cards. Both have just been updated. And both are free by request! Let our volunteers know how many you need, and they will send them as soon as the professionally printed pieces (English language only) are delivered by the printer. Don’t forget to provide your mailing address when emailing brochures@mddsfoundation.org.

Another Accolade

For the eighth year in a row, the MdDS Foundation has earned the Candid GuideStar platinum seal of transparency. Ethical principles and accountability are core values of the Foundation, and not just when it comes to fundraising. Our commitment to transparency and the MdDS community extends to every aspect of our organization. From advocacy to outreach, we work hard every day to earn and keep your trust.

What You’re Missing if You Aren’t Subscribed to Our e-Newsletter. Newsletter subscribers receive in-box updates before they are posted anywhere else. Subscribe and be the first to receive updates on these and other projects.

Don’t confuse your blog post subscription with our newsletter. Blog posts are sent by WordPress. Our newsletter is sent through Mailchimp.

Thank you!

This newsletter highlights work that was only possible with the support of the MdDS community and volunteerism at work. If you want to help move these projects forward, volunteer! Get to know our Mission and Goals, then write to us at connect@mddsfoundation.org. Tell us how you can help. We are waiting to hear from you.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.