Welcome to the PandasNetwork.org Newsletter
February, 2nd 2012
The LeRoy, NY mystery has brought a lot of attention to PANS / PANDAS and many doctors and parents have sent their messages to the media ----you ARE being listened to!
Dr. Susan Swedo from the NIH has recently offered her advice as well to the situation.
We've received many concerned emails and are answering them one by one....fast as we can.
More newsletters will be coming with parent experiences and new research efforts. With warm wishes for a healthy winter ....
Diana Pohlman and the PandasNetwork.org Volunteers
Could the Students of Le Roy have PANDAS?
A Summary of Recent Events and the Scientific American Article (2/2/12)
Not many people haven't heard of the multiple students in Le Roy, NY who experienced a sudden onset of Tourette-like movements. To date, there are doctors claiming it could be conversion disorder, groups thinking it may be environmental, some insisting it is vaccines. Then there is the other possibility that is getting more and more attention....PANDAS.
In recent weeks, Dr. Trifiletti
has gone to see the students, offering his services for free in hopes of confirming or ruling out a diagnosis of PANDAS. Just yesterday, it was announced that the NIH has offered free examinations
by two doctors, one being Dr, Swedo, the "founding researcher" of PANDAS.
Now, Scientific American
released an article today titled Could an Infection Cause Tourette-Like Symptoms in Teenage Girls?
In this article, the new upcoming name for PANDAS (PANS) is discussed. They bring to the light the possibility of PANS being the cause of the Le Roy situation in a question/answer interview with Dr. Michael Jenike from the IOCDF
. The editors of the magazine welcome parent comments
on this web-link to the story.
Among the topics discussed in Scientific American are:
- What is PANDAS, and why is it now called PANS?
- How can an infection cause a mental illness?
- What else makes you think these cases could be PANS?
We are happy to see increasing numbers of people, doctors, and media outlets bringing to light PANDAS/PANS and pushing to have these students correctly assessed for the disorder. PandasNetwork.org
is closely watching the events as they unfold and doing what we can to help. Regardless of what the final diagnosis is, we truly hope these students find out the cause of this sudden onset of tics and they get the help they need.
Bay Area PANDAS Parent Symposium
*Save The Date*
You are enthusiastically invited to participate in this ground-breaking (parent-only) event:
Bay Area PANDAS Parent Symposium
Saturday April 28, 2012
Embassy Suites, Burlingame CA
(by the San Francisco Airport )
What to Expect:
- A full day of networking, education, inspiration, discussion and advocacy organizing.
- PANDAS experts will be presenting!
- Beautiful surroundings and excellent company
- Lunch and refreshments
Anticipated Cost to Attend the Conference:
- Discounted block of rooms at Embassy Suites for $119/night will be available soon (includes breakfast and Happy Hour gathering / reception)
- Conference and luncheon fee will be somewhere in the range of $20-50 (or less if we are able to have the event fully sponsored - which is our goal!)
We are looking for sponsors! For more information about sponsorships please contact:
Amy Smith at firstname.lastname@example.org or
Eric Dyssegard at email@example.com
STAY TUNED FOR MORE INFO!!!