amyjoy Posted March 2, 2012 Report Posted March 2, 2012 oh my gosh i'm so excited and even breathless and grateful that we are pulling together an awesome event by parents, for parents. If you'd like to find out more or register, here's the website: pandasparentsymposium.blogspot.com We are creating a Scholarship Fund and hopefully this will help some of us incredibly financially strapped parents attend if they really need the help. I was hoping we would see more sponsorships for this purpose, to lower the cost of the event to parents (which is actually still pretty low - $55 for the entire day including lunch and speakers and everything....but I had hoped it would be still lower). Anyway, I hope to have the chance to meet some of you at this event. Many Blessings amy
Bordercollie Posted March 4, 2012 Report Posted March 4, 2012 Amyjoy you are amazing. Can't wait! How is your son doing?
amyjoy Posted March 16, 2012 Author Report Posted March 16, 2012 HI BORDER COLLIE, If you come to the event...you may just find out in person since we will be having a special guest open the symposium....
PowPow Posted March 16, 2012 Report Posted March 16, 2012 how can we do one of these on the East Coast?
amyjoy Posted March 17, 2012 Author Report Posted March 17, 2012 WELL, i was at the one in Indiana in November and it was powerful, so i took the ideas i had and created it. You can also. It would help if you can come to the one in SF but even if not, you can do it. the Symposium will be big and awesome and moving and information rich. We even have a massage institute donating massage therapists for free chair and possibly table massages the entire day. We have networking events built in before and after the symposium and the latest and greatest in PANDAS research - Dritan Agalliu from UC Irvine presenting his research on the blood brain barrier and what exactly it means to breech it; and lots of info on tonsils and tonsil pathology - PANDAS treatment and Lyme with Dr. Schweig from Hill Park Medical Center in Northern CA and Dr. Margo Thienemann, a Neuropsychiatrist and one of the very early voices and proponents of PANDAS care; a session on how to manage education accommodations with Dr. Jamie Candelaria-Greene who is an educator and special educator and works with families out here to negotiate the battleground that schools can become as soon as you ask them for something special...and so much more... here's the website www.pandasparentsymposium.blogspot.com
amyjoy Posted March 17, 2012 Author Report Posted March 17, 2012 While I'm already talking about the symposium I might as well tell you a little more about it.... We will have a wonderful session and facilitated discussion on dealing with the stress and the trauma and havoc of having a child with PANDAS as part of our family life. We will talk about trends, and who's doing what in the PANDAS world, what the White Paper says and means, whatever statistics are available, what's happening at the functional medicine level in terms of what we're seeing as co-occurring conditions, what other lab tests are being done to assess the greater health and metabolic pathways of our PANDAS children... We will talk about advocacy - advocating for our children but also advocating for recognition of the existence of PANDAS not just in the news, but in the medical world and treatment protocols and insurance coverage for our children. It will be worth the schlep.
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