The Dempster Family Foundation’s (DFF) 22q Mystery Tour bus is crossing the country from July to October to educate people nationwide about the mystery of 22q deletion syndrome, a disorder caused by a micro-deletion of the 22nd chromosome. Beginning July 7, the Dempster Family Foundation 22q Mystery Tour will kick-off at the 8th Biennial 22q11.2 Deletion Syndrome Meeting at Walt Disney World® in Orlando, FL. and make appearances in five additional metropolitan cities including Cincinnati and Columbus, OH; Pittsburgh, PA; Royal Oaks, MI; and Lincoln, NE. The tour will stop at events organized by families of children with 22q deletion syndrome and hospitals and clinics to support families of children diagnosed with 22q deletion. The Foundation will also visit community festivals along the route to educate people about the 22q deletion disorder, its impact on families and the importance of newborn screening for 22q deletion syndrome.
“The goal of the mobile tour is to inform the public about 22q Deletion syndrome and provide information and resources to individuals about this relatively unknown disorder,” said Ryan Dempster, Chicago Cub and president of the Dempster Family Foundation. Dempster’s daughter, Riley, now 3, was born with the disorder. “This tour also demonstrates the Foundation’s ongoing commitment to providing support for families who may be struggling with a 22q diagnosis or symptoms related to the disorder.”
For people who want to join the 22q bus, they can create an “I’m on the bus for kids with 22q” video and upload it right on the 22q Mystery Tour website or post to the foundation’s Facebook and Twitter pages for a chance to win weekly prizes. The contest, which runs through December 31, 2012, is open to residents of the 50 United States (and D.C.) who are age 18 or older. “I’m on the bus for 22q” videos must be compelling, original videos – no longer than 60 seconds in length. A winning video will be selected on the 1st and 15th of each month through Dec. 31, 2012. Videos have already been uploaded by celebrities such as actor Gary Sinise, Cedric the Entertainer, America Pickers host Mike Wolfe, golfer Hale Irwin and professional hockey player Erik Cole of the Montreal Canadiens, all of which are “jumping aboard” the bus to support the cause.
According to statistics, 22q deletion syndrome often goes undiagnosed; but, it is almost as common as Down syndrome, the widely recognized chromosomal disorder. An estimated 32,000 children are born worldwide each year with 22q deletion syndrome, making it present in one out of every 4,000 live births. Medical experts have identified 180 health and development issues related to 22q deletion disorder, ranging from mild to life-threatening. If not treated appropriately, many of the symptoms can cause lifelong negative effects.
“Many people living with 22q are unaware; as even the most astute clinicians often fail to recognize the disorder. Because of this, we wanted to provide people with the necessary information so that they can be informed and know where to turn for support” said Dempster.
For more information on the 22Q Mystery Tour, please contact Michelle Breedlove Sells at (405)269-9731 or email@example.com.
2012 TOUR DATES
July 2012 | 07/06 to 07/10/2012
Maiden Voyage – 22q International Conference – ORLANDO, FL
August 2012 | 08/22/2012
22Quties Beauty Pageant – PITTSBURGH, PA
08/31 to 09/03/2012
Arts, Beats, and Eats Festival – ROYAL OAK, MI
September 2012 | 09/07/2012
22q Central’s Annual Wine Tasting Fundraiser — LINCOLN, NE
09/15 – 09/16/2012
Cincinnati Children’s Hospital – CINCINNATI, OH
Nationwide Children’s Hospital, 22q Conference – COLUMBUS, OH
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