PANDAS
RALLY!
The 1st Annual PANDAS/PANS RALLY is an event to bring together children living with PANDAS/PANS so they can do activities, have fun, and know that they are not alone in the battle they are fighting on a daily basis. So often, children living with PANDAS/PANS feel isolated and alone. We want to let the children know they are not alone, build awareness, and share information with our community and with parents, children and medical professionals alike.
This will be an old fashioned picnic with fun, games, prizes and contests for the children. We want to create an environment that will give a space and time for parents to come together, brain storm, learn better ways to handle stress, and just socialize with likeminded individuals that will understand the ups and downs and daily life of those dealing with PANDAS/PANS.
This event will also be a fundraiser for PANDAS/PANS RESEARCH! ALL FUNDS WILL GO TO CURRENT RESEARCH BEING CONDUCTED BY Dr. M. Cooperstock/ Dr. Swedo/ Dr. Cunningham, respectfully. This is a non-for profit event, with all funds gained from any form of donations going to research only!!
LET'S
GIVE
****Please see the RESEARCH TAB for a copy of the letter/proposal from Dr Cooperstock as to the need for research funds.****
About this disease.....
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. Researchers are only beginning to study and understand this syndrome, and therefore there are a lot of unanswered questions about what it is and what causes it. What we do know is that kids with PANS have severe symptoms of obsessive-compulsive disorder (OCD) that come on very suddenly. They also may experience sudden and severe anxiety, mood swings, irritability, or uncontrollable movements. School performance might suffer, and some kids have sleep disturbances or a sudden case of bedwetting. It's unclear why these symptoms occur. One theory is that a prior infection may have led to the development of antibodies that — in addition to attacking the infecting germs — mistakenly targeted an area of the brain that controls behavior. In the past, some kids with these symptoms were diagnosed as having PANDAS (Pediatric Acute-onset Neuropsychiatric Disorders Associated with Streptococcus). This name was given because it seemed that symptoms were brought on by a streptococcus infection, like strep throat. Now, however, researchers are finding that symptoms can be triggered by other infections (such as the flu, chickenpox, mycoplasma, and Lyme disease) or may be caused by something else entirely. Because of this, the new name "PANS" was coined to more accurately describe the syndrome (and put the focus on the symptoms, rather than the symptoms and cause). PANDAS, a term still widely in use, is now considered a type of PANS. PANS isn't contagious, so you don't have to worry about your child catching it from a classmate. However, if the infection that triggered PANS is contagious (as with strep throat), it's possible for that illness to be passed from one child to another. But in general, you don't have to worry about your child developing PANS. Almost all school-age kids get infections and almost all recover with no complications. Similarly, most kids who have OCD did not get it as a result of PANS. Scientists are studying PANS to better understand the possible link between infections, OCD, and other symptoms. Reviewed by: Elana Pearl Ben-Joseph, MD Date reviewed: May 2012
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