Opening Ceremony to Celebrate National MPS Awareness Day and to Raise
Awareness for Rare Disorders
NEW YORK, Feb. 25 /PRNewswire/ -- The National MPS Society, a non-profit
organization whose mission is to find a cure for MPS and ML disorders, took
part in the opening bell ceremony at The NASDAQ Stock Market today to increase
awareness of these rare, life-threatening genetic disorders. Last week the
U.S. Senate passed a unanimous resolution, officially making February 25
National MPS Awareness Day. The day will be set aside annually to remember
those who have lost their battles and those who struggle daily with MPS and
ML.
"We're thrilled to be part of the NASDAQ opening and to officially
recognize National MPS Day, which gives our affected families another
opportunity to spread the word and celebrate their children's lives," said
Barbara Wedehase, executive director of the National MPS Society.
Mucopolysaccharidoses (MPS) and Mucolipidoses (ML) are genetic disorders
that cause cells to perform improperly, resulting in progressive damage
throughout the body, including the heart, bones, joints, respiratory system,
and central nervous system. The diseases are rarely apparent at birth, but
the signs and symptoms develop with age as more cells become damaged. As the
damaged cells accumulate in the body, the body shuts down, eventually leading
to a premature death. At this time there is no cure.
As the original sponsor of the resolution, U.S. Senator Lindsey Graham, R-
South Carolina, said, "It is a parent's role to make sacrifices for their
child; yet, for the parents of a child diagnosed with MPS, the sacrifices are
exceptional. I have had the opportunity to meet with a number of parents of
MPS children. These parents exhibit amazing hope, love, grace and humor that
can often mask the many trials they undergo in caring for their children. My
staff and I are constantly impressed at their ability to advance their cause
while also selflessly caring for their children."
The MPS Society is dedicated to providing support to individuals and
families affected by MPS and ML diseases as well as promoting public and
professional awareness of these disorders. Additional information is
available online at http://www.mpssociety.org.
Contact:
Jessica Hosford
207-947-1445
jessica@mpssociety.org
SOURCE The National MPS Society
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Related links:
http://www.mpssociety.org
CONTACT:
Jessica Hosford of The National MPS Society,
+1-207-947-1445, jessica@mpssociety.org
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