Race to Rare Disease Day!
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As you know, there are only
a few weeks left until Rare Disease Day is held around the world.
The MdDS Balance Disorder Foundation would like to bring awareness to
RDD and to MdDS by asking all of you to educate your friends, family
members, co-workers, medical professionals, and anyone else you can
think of!
Many of you have Facebook friend lists that include hundreds of people;
let them know about Mal de Debarquement Syndrome and Rare Disease Day.
Ask them to go to the MdDS Balance Disorder Foundation web site to learn more.
How will we know our education efforts are working? Our goal is to
raise $10 from 1000 people. That's right just $10 from 1000 people to
bring hope that further awareness will bring research and understanding
to this baffling syndrome. Ten dollars??? That's barely one lunch, or a
magazine and a coffee!
Donate on Facebook at the Mal de Debarqument Syndrome Cause page;
at the Foundation web site using Pay Pal;
or by sending a check directly to the Foundation at:
Marilyn Josselyn, President
MdDS Balance Disorder Foundation
22406 Shannondell Drive
Audubon, PA 19403
Dr. Cha speaks to the realities of MdDS in this New York Times Article: http://www.nytimes.com/2008/10/28/sci...
"Doctors are also learning to better
identify the symptoms associated with a dysfunctional vestibular
system, and to distinguish among a variety of distinct disorders that
were previously lumped together as Meniere’s disease. One such syndrome
is mal de debarquement, in which people who have spent time aboard a
ship, plane or other moving vehicle still feel that they are rocking,
dipping and swaying long after they’ve returned to solid ground.
The syndrome has become more prominent given the popularity of
cruiseliner vacations, and though most episodes are mild and
short-lived, severe cases can last months to years and be accompanied
by what sufferers call a brain fog, a sense of cognitive slowing so
debilitating that they may end up with careers, relationships, lives in
ruin.
It remains baffling and difficult to treat, said Dr. Yoon-Hee Cha, a
neurologist at the University of California, Los Angeles, “but I’d like
to emphasize that it is a real disorder, and that physicians shouldn’t
discount what their patients may be telling them.”
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MdDS
Foundation Advocates for
Rare Disease Day 2009
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February
28, 2010
Global
Events to Increase Awareness
Alone we are Rare.
Together we are Strong.
UK
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| Donations
and contributions are tax-deductible as allowed by
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| Informational
Brochure |
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This site is
designed for those suffering from MdDS (Mal de Debarquement
Syndrome) and the health care professionals who treat them.
If you have been diagnosed or suspect that you have MdDS or
Disembarkment Syndrome, sign up for a free membership at our support
site and review or search the thousands of
messages
from those who suffer from MdDS. There, you will find caring people
who understand what it is like to live with this rare balance
disorder; members are from all over the world. Please join us to
share and learn from others.
The MdDS
Balance Disorder Foundation is an all-volunteer 501(c)(3)
nonprofit PA foundation dedicated to promoting awareness of Mal de
Debarquement Syndrome and seeking treatments and a cure for people
suffering from this disorder.
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Copyright
© 2006-2010, 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.
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Last
modified on February 13, 2010
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