ALEXANDRIA, Va., Aug. 27 /PRNewswire/ -- A special "Mad Hatter" Tea Party is being held on October 4th in Alexandria, Va. to raise funds for a little-known disease that affects thousands of children worldwide. A full range of activities for children and adults is planned, including a "Mad Hat" contest and silent auction.
The special family-fundraising event was conceived by Stephanie Bozarth, whose daughter, Annabelle, was diagnosed with the disease called Morquio Syndrome when she was six months old. Event proceeds will benefit The National MPS Society, to fund Morquio research and development of treatment for Annabelle and others affected with the disease worldwide.
According to Bozarth, last year's inaugural fund-raiser raised $50,000 for MPS research. "Based on last year's success, we hope to see more than 250 DC metro children and adults this year on Sunday, October 4, 2009 from 3:00 p.m. to 5:30 p.m. at the Windsor Room in the Embassy Suites Old Town - Alexandria."
Morquio Syndrome is a degenerative disease causing severe bone abnormalities and organ damage. It is caused when a child is missing an enzyme essential in cutting up mucopolysaccharide -- which is normally used in developing healthy bones and cartilage. Physical growth slows and often stops in affected children at eight years old. Children with more severe cases may not live beyond their 20s. Currently, 370 patients are registered with this syndrome and thousands worldwide are estimated to carry the degenerate gene, but are not yet diagnosed.
"With limited awareness of this syndrome, funding is inadequate to move research for treatment forward," Bozarth noted. "Our goal is to raise $50,000 to support Morquio treatment research. There is no cure; however, with treatment there is potential to stop the disease progression and provide relief to the daily challenges faced by people with MPS."
"Mad Hatter" Tea Party guests will enjoy a variety of family entertainment, including garden tea party portraits, Alice in Wonderland face painting, mad hat contests, and a silent auction. Mr. Knick Knack! is the event entertainment, promising a memorable show of rousing sing-alongs and energetic dance.
"The Mad Hatter event will be a bright, cheerful and fun garden tea party -- an exciting celebration of life for all ages. It is our hope that the Alexandria community will support this family activity that has the potential to impact children worldwide," Bozarth added.
The National MPS Society is a 501(3)c non-profit organization whose purpose is to find cures for MPS and other related diseases. They provide hope and support for affected individuals and their families through research, advocacy, and awareness of these devastating diseases.
For more information about the event or to make a tax-deductible donation to support The National MPS Society, please visit the "Mad Hatter" event website at www.morquio.org.
To learn more about the Bozarth Family story please visit: http://www.caringbridge.org/visit/belle.
Contact: Stephanie Bozarth 703.256.1980 firstname.lastname@example.org www.morquio.org
|SOURCE The National MPS Society|
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