MadHatter Party to Benefit Intl Morquio Org Fundraising to Support Development of Treatment

PRLog (Press Release) – May 08, 2008 – More than 250 DC metro children and adults will celebrate life at an Alice in Wonderland themed, “Mad Hatter” tea party on Sunday, June 1, 2008 from 12:30PM -2:30PM at the Stardust Restaurant in Alexandria. Event proceeds will benefit The International Morquio Organization, to fund research and development of an enzyme replacement treatment for Annabelle Bozarth, and thousands of patients affected worldwide.

Morquio Syndrome is a degenerative disease causing severe bone abnormalities and organ damage. Morquio syndrome is caused when a child is missing an enzyme essential in breaking down Keratin Sulfate — a process which is important to the development of healthy bones and cartilage. Physical growth slows and often stops in affected children sometime after they reach 3 years old. Skeletal abnormalities can include a bell-shaped chest, a flattening or curvature of the spine, shortened long bones and abnormal growth of the hips, knees, ankles and wrists. Restricted breathing, joint stiffness and heart disease are also common. Children with more severe cases may not live beyond their 20s or 30s. Currently, 370 patients are registered with this syndrome and thousands worldwide are estimated to carry the degenerate gene, but are not yet diagnosed.
“Annabelle is a happy 2 year old, with bones very different than ours,“ shares proud mother Stephanie Bozarth, “With limited awareness of this syndrome, funding is inadequate to move the clinical trial phase forward. Our goal is to raise $50,000 to support trial and treatment. There is no cure for the syndrome, however; the enzyme replacement treatment has the potential to stop the disease progression in our daughter and provide relief to her daily challenge.” The Bozarths’ grassroots fundraising series will culminate in the “Mad Hatter” event to benefit the International Morquio Organization.

The International Morquio Organization’s mission is to act as a liaison between patients, physicians and scientists, and pursue funding for education, families and research. “This is an exciting milestone as we reach the critical phase of our clinical research and trial,“ states Dr. Shunji Tomatus, an associate professor at the St. Louis University in Missouri who has been working on a Morquio treatment for over 17 years, “The results will have a global affect on patients lives.” Dr. Tomatus’ research team has isolated and created the enzyme that will completely stop the progression of this terrible disease in young children. Funding is required to support this research into a trial and treatment phase.

“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. Kick Knack! is the musical entertainment – promising a memorable show of rousing sing-along’s 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’s our hope the Alexandria community will support this family activity with the potential to impact children worldwide,” said Stephanie. “I look forward to watching Annabelle dance and sing to Mr. Knick Knack! with her friends and neighbors”.

For more information about the event, or make a tax-deducible donation to support The International Morquio Organization, 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.


The International Morquio Organization & The Carol Ann Foundation is a 501c3 non-profit organization dedicated to seeking out people who have Morquio Type A in order to provide a mutual aid network; act as a advocate between patients, physicians and scientists; compile medical information into a database; and pursue funding for education, families and research. www.morquio.com