What is the 22q Mystery Tour

Every gas station, rest stop, parking lot, and event site is now an opportunity to briefly explain a little bit about 22q
Deletion Syndrome.  From one side of the country, to the other we educate the curious viewers and encourage them to "get on the bus" by tweeting a pic of the bus or shooting a quick "I'm on the bus for kids with 22q video" which is immediately uploaded to our YouTube Channel and social media pages where they are viewed by thousands!   

If you have been touched by 22q Deletion Syndrome, we would like to bring the 22q Mystery Tour Bus to your town and help "drive" local awareness where you live... with YOUR help!  We encourage each and every parent and/or adult living with 22q or VCFS to "join the ride" by organizing a fundraiser or awareness event and tell us about it. (Give us plenty of notice as tour dates are planned several months in advance)

With more than 7000 known "rare" disorders, our voices must be elevated in our collective fight for the spotlight.  The Dempster Foundation is dedicated to these goals and we urge you to join us in these efforts.  Collecting videos from curious onlookers eager to "join the ride", is one of the most creative elements of the tour.   If you have not submitted your video yet... What are you wating for???   Celebrities like Cedric the Entertainer, Gary Sinise, and many others have already submitted videos in support of the 22q Mystery Tour. 

See All Of Our 22Q Bus Videos Here -YouTube

  HERE"S HOW YOU CAN GET ON THE BUS FOR 22Q!

1. "Share" our website (www.22qBus.com) on your Facebook, Twitter, Tumbler, or Pinterest for chance to win a signed photo of Ryan Dempster(monthly drawing)

2. "Upload" your "I’m on the bus for kids with 22q!" video for a chance to win a signed baseball from Ryan Dempster (weekly drawing) CLICK HERE

3. "Organize" a 22q Fundraiser where you live and invite us to join you

4. "Donate" to the #22qBus Mobile Awareness Tour’s GAS FUND. CLICK HERE

5. "Sign" the petition to add the $6.00 test for 22q to US Newborn Screening. CLICK HERE

 WHAT YOU NEED TO KNOW ABOUT 22q DELETION SYNDROME

• An estimated thirty two thousand children are born worldwide each year with 22q Deletion Syndrome
• Most will be "sick", but many families and physicians will be baffled by the illness and/or developmental delays for years
• When a child is born with 22q "sick" can mean over 180 different health and developmental issues
• Some of these issues are mild, others critical and if not treated appropriately can cause lifelong negative effects
• One child with 22q may battle 3 of the 180 possible concerns while another may struggle to overcome 53 of them
• No two children born with 22q present the syndrome in the same way. This makes diagnosing 22q very difficult for health care professionals
• Down syndrome is the #1 chromosome disorder responsible for intellectual disabilities. 22q Deletion Syndrome is the 2^nd

 WHAT ARE THE SYMPTOMS OF 22Q?

• Symptoms reprinted from ^{www.22qcentral.com}
• Cardio-vascular
• Cleft palate
• Feeding difficulties
• Immunization problems
• Growth hormone deficiencies
• Delayed neurological and psychological developments
• Speech problems
• Renal abnormalities

ANOMALY FACT SHEET OF SYMPTOMS

• Abdominal/kidney/gut
• Hypoplastic/aplastic kidney
• Cystic kidneys
• Anal anomalies (displaced, imperforate)
• Inguinal hernias
• Umbilical hernias
• Single case of malrotation of the bowel
• Hepatoblastoma and diaphragmatic hernia (rare)
• Diastasis recti abdominis
• Cardiac findings
• VSD (ventricular septal defect)
• ASD (atrial septal defect)
• Pulmonary atresia or stenosis
• Tetralogy of Fallot
• Right-sided aorta
• Truncus arteriosus
• PDA (patent ductus arteriosus)
• Interrupted aorta
• Coarctation of the aorta
• Aortic valve anomalies
• Aberrant subclavian arteries
• Vascular ring
• Anomalous origin of carotid artery
• Transposition of the great vessels
• Tricuspid atresia
• Cognitive/learning
• Learning disabilities (math concept, reading comprehension)
• Concrete thinking, difficulty with abstract thinking
• Drop in IQ scores in school years (test artifact)
• Borderline normal intellect (based on 100% as "normal")
• Occasional mild mental retardation
• Attention deficit hyperactivity disorder (ADD/ADHD)
• Autism
• Craniofacial/oral findings
• Overt, submucous or occult submucous cleft palate
• Retrognathia (retruded lower jaw)
• Platybasia (flat skull base)
• Asymmetric crying facies in infancy
• Structurally and/or functionally asymmetric face
• Straight facial profile
• Cleft lip (uncommon)
• Enamel hypoplasia on teeth (primary dentition)
• Small teeth
• Congenitally missing teeth
• Hypotonic, flaccid facies
• Downturned oral commissures
• Microcephaly (small head)