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The
History |
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Marilyn and Roger Josselyn
Co-Founders of the MdDS Balance Disorder Foundation
In
1998, Marilyn contracted
a poorly understood condition of imbalance after a Russian waterways
cruise. She had to immediately quit her job due to what was diagnosed as
Mal de Debarquement Syndrome or MdDS. As a result of their experiences in
learning about and adjusting to life with MdDS, Marilyn and Roger
Josselyn began a crusade to increase awareness about this disorder.
This crusade has grown into the current MdDS Balance Disorder Foundation.
What started as a member base of a few dozen has grown into over 600
worldwide. Thus, there has been great progress finding those who suffer
from MdDS, improving knowledge about MdDS, and providing a vibrant Support
Group for those affected by MdDS.
Roger
was a retired business manager who picked up on the heels of Stanford PhD
candidate, Evan Torrie, after
MdDS caused Evan to abandon his pioneering website dedicated to the
disorder. Marilyn and Roger met with Sue Barnes and decided to pursue
internet (website) development. They initially shunned the complexities of
forming an independent non-profit organization in favor of gaining
immediate benefits under the umbrella of the National Heritage Foundation
(NHF). These benefits included not only status as a tax exempt
organization that functioned under the oversight of the NHF, but, also a
website opportunity provided by the NHF. The latter established the
first internet presence of the fledgling Foundation. However,
because of changes in US tax laws regarding non-profit entities, it became
necessary to transition into independent status. Thus, by January of
2007, Roger was able to complete the complexities of filing the necessary
paperwork to become an independent 501(c)(3), subject to the usual state
and federal regulations. The
initial
goal of the Foundation was to harness research directed towards effective
treatments and a cure for MdDS. However, the lack of specific tests
to diagnose MdDS redirected Foundation efforts to solicit additional
volunteers who were willing and able to "spread the word". In
2003, the Foundation established an internet-based
MdDS Support Group for
those suffering from MdDS, and their families, who needed to know what
they suffered from. Expanded efforts were directed towards educating
health care providers. Initial
publicity was through local newspapers and an occasional reference in
professional articles. The Foundation created and distributed an
informative brochure. These early efforts were assisted by VEDA
(Vestibular Disorder Association) and NORD
(National Organization of Rare Diseases), the latter having listed the
Foundation through the National Institutes
of Health (NIH).
The Foundation then gained the support of a five member Advisory Council
of physicians and garnered international attention through the
efforts of volunteers. Subsequently, the Foundation was fundamental in
efforts to have MdDS listed as an index item under ICD-9-CM
code 780.4, "Diagnosis, Dizziness & Giddiness Syndromes".
Since 2006, the Foundation has sponsored a monthly Newsletter that is
routinely sent to a growing number of medical professionals; this effort
has gained significant attention through the publication of survey
findings from the 600+ members of the MdDS
Support Group. Several members participated in tests with two forms of
tactile brain retraining devices. And, a "severity scale" was
published to aid in quantifying the extent to which members were impaired
by the disorder. In 2007, national press and TV coverage of MdDS allowed
large numbers of those suffering from misdiagnoses to identify their
disorder and join the MdDS
Support group; the gratitude in "finding I am not
crazy" was overwhelming.
Since
2006,
the Foundation has directed attention to medical professionals through
attendance at the annual conventions of selected medical specialties.
In 2006 and 2007, the Foundation hosted a booth at the annual meeting of
the American Academy
of Otolaryngology - Head and Neck Surgery Foundation (AAO-HNSF), also
known as the OTO EXPO. Recently, the Foundation was represented at the
2008 annual meeting of the American Academy
of Neurology (AAN). While many professionals had diagnosed
"a few" of their patients with MdDS, the predominant query was "how
can I treat it?".
At the end of 2007, Roger stepped down from his position as the leader of the Board of the MdDS Balance Disorder Foundation. Marilyn continues in her role as the Treasurer of the Board. Sharon Renschler began her new duties at the helm in January 2008. The new Board includes more key players than before and offers great promise of the first real steps toward MdDS research. Although the Josselyns and Foundational efforts have made the medical profession more aware of this widely misdiagnosed disorder, much remains to be done so that someone can walk into her/his family doctor and be promptly diagnosed with MdDS.
This MdDS Balance Disorder Foundation site is designed for those suffering from MdDS (Mal de Debarquement Syndrome). If you have been diagnosed or suspect that you have MdDS, sign up for a free membership at our support site and review or search the thousands of messages from those who suffer from MdDS. Here, you will find caring people who understand what it's like to live with this rare balance disorder. Our members are welcomed from many countries, so feel free to contact us. The MdDS Balance Disorder Foundation is a 501(c)(3) nonprofit foundation dedicated to promoting awareness of Mal de Debarquement Syndrome and seeking treatments and a cure for people suffering from this disorder. Copyright
© 2006-2008 MdDS Balance Disorder Foundation, Inc. All
rights reserved. Unauthorized use prohibited. Copyright materials
may not be reproduced in whole or in part by persons, organizations,
or corporations without the prior written permission of the MdDS
Balance Disorder Foundation. The information contained in this web
site is not a substitute for medical advice or treatment. The MdDS
Balance Disorder Foundation recommends consultation with your doctor
or other health care provider. |
