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SCROLL WARNING – Well familiar with travel restrictions and getting work done from our at-home offices, the pandemic has not halted our progress. New connections with medical practitioners and researchers, attending virtual conferences and meetings, and working with our rapidly growing world-wide support group are just a few of the things we've been working on. This is a long newsletter but we want to give you a behind-the-scenes look at our many projects. Read this newsletter in sessions if necessary.

Diagnostic criteria of Mal De Débarquement Syndrome were established by an international committee, led by Dr. Yoon-Hee Cha, and published in the Journal of Vestibular Research.

The diagnostic criteria were presented by Dr. Cha during the Bárány Society's 2021 annual meeting. Leadership from the MdDS Foundation attended the virtual meeting, which included a live question and answer session and opportunities to hear from neurotologists from all over the world. Of great interest to participants were the presentations by Dr. Cha, who chaired the committee charged with defining and publishing the consensus definition of MdDS. Her presentations were straightforward and answered many questions about how the committee came to the consensus definition and described the diagnostic criteria in easily understood terms. Her presentation on motion sickness provided a juxtaposition to the definition of MdDS. The Bárány Society is one of the most highly respected sources for neuro-otology information. An international and interdisciplinary group of doctors, their information is shared with clinicians around the world.

Biomedical research studies provide scientific data that inform health care systems about improved diagnostic and therapeutic tools. Well-trained translational scientists examine this disorder and conduct clinical studies with a goal of learning more about our syndrome. This process is slow, expensive, and supported by funding agencies including grassroots organizations such as the MdDS Foundation, which remains the primary source of MdDS research funding in the world. In total, the MdDS Foundation has disbursed a total of $1,176,060; over $250,000 of this amount was obtained via grassroots fund-raising. This is a considerable feat for a small, all-volunteer patient advocacy organization.

In 2008, the world’s literature on MdDS was only 16 publications. Remarkably, over 80 publications were produced in the last 13 years. Publications by investigators who received financial support for research studies from the MdDS Foundation are prominent in the biomedical literature. A curated list of publications on MdDS is available on our website.

Activities of the MdDS Foundation include fiscal support for biomedical research as well as the promotion of MdDS awareness and education. Although the Board of Directors is a completely volunteer driven organization, there are expenses associated with Foundation activities including maintenance of our website, an important resource for medical professionals and the general public alike.

We thank our major donors, family foundations, Facebook fund-raisers, monthly donors, and all who support our efforts. Your donation of time and/or money makes a difference!

No donation is too small and will allow us to move forward with a number of new initiatives, including a pilot study at South Valley Physical Therapy in Denver, Colorado. Details will be shared as they develop.

Together we are strong, mighty, and able! Make a secure donation using the red button below or through our recently refreshed website, and enjoy the latest blog post, Gravitational Pull, on your visit.

Last Fall, Board member, Deb Russo, participated in the annual national Rally for Medical Research. Throughout the Hill Day, Deb presented at virtual meetings with associates of Senators and Representatives from the state of Massachusetts while the group mentor presented on a national level. The group included medical professionals from the state’s flagship medical school, researchers from the Dana Farber Institute, parents and advocates, and patients themselves. They represented a variety of medical conditions but five out of nine of the conditions were neurological, with MdDS being unrecognized and the least understood. During each of her six presentations, Deb explained the realities of life with a rare under-researched condition and explained the need for not only research dollars but also for researchers themselves. Making monetary compensation a priority will help entice practitioners to become researchers. Together, we must continue to call on our nation’s policymakers to make funding for the National Institutes of Health (NIH) a national priority and raise awareness about the importance of continued investment in medical research that leads to MORE PROGRESS, MORE HOPE and MORE LIVES SAVED.