PANDAS Meet and Greet at the Upcoming IOCDF Conference

[thereishope]

If you plan on going to the IOCDF Conference, some parents will get together to meet each other prior to Dr Latimer's presentation. Here's the link for info http://pandasnetwork.org/2011/07/pandas-meet-and-greet-at-upcoming-iocdf-conference/

[browneyesmom]

Great! I talked with Diana yesterday about the conference. I will be there and have an exhibit: PANDAS - PITAND Awareness & Research Support on the same level.... look for it!

 

If you plan on going to the IOCDF Conference, some parents will get together to meet each other prior to Dr Latimer's presentation. Here's the link for info http://pandasnetwork.org/2011/07/pandas-meet-and-greet-at-upcoming-iocdf-conference/

[sf_mom]

Vickie, Would you be willing to have a flyer available on how to properly test for Lyme Disease and its co-infections since its such a problem for so many of us? I could speak with our Dr. have something put together for you.

 

-Wendy

[thereishope]

PANDAS Network isn't having a table. Representatives are there to attend the presentations so we can remain in the loop of what is being conveyed and discussed. Since they will be there anyway, we thought it would be nice to meet other parents. I, myself, will not be there. Denise is having a table that she is doing independently and, to my knowledge, not affiliated with any organization.

 

Vickie, Would you be willing to have a flyer available on how to properly test for Lyme Disease and its co-infections since its such a problem for so many of us? I could speak with our Dr. have something put together for you.

 

-Wendy

[sf_mom]

Got it, thanks Vickie... Denise any possibility of having a Lyme testing flyer available as a hand out?

Edited July 23, 2011 by SF Mom

[browneyesmom]

Hi ladies,

 

Wendy, the exhibit I am affiliated with is for an organization: PANDAS Awareness & Research Support... working with Dr. Madeleine Cunningham, seeking to raise awareness & funds to support her PANDAS research, which is so pivotal for our children. She does not receive the government funding that some labs do. All proceeds raised from donations or products featuring the PANDAS awareness ribbon go to support her PANDAS research. I'm assuming you are familiar with this research.

 

PANDAS Awareness & Research Support is eager to work with any of the other PANDAS organizations (a couple have given me permission to list them on our website & some collaborations are in the early stages) and/or individuals or groups for this cause. Some ideas for fund raising are on our website: http://www.pandas-pitandawareness.org/ We are still doing a great deal of behind the scenes work to launch this, so anticipate changes as we finalize and work toward more aggressive fund raising. I think walk-a-thons would be a great asset to our cause! But, I digress... sorry, I can be rather passionate about our need for research.

 

I am in process of designing flyers, cards and signage. A video to play an endless loop during exhibit hours is in the works as well. The video will show PANDAS kids and have labeling to identify symptoms with which they struggle. Please see: http://www.latitudes.org/forums/index.php?showtopic=14376 as we are seeking any photos parents are willing to permit use of for this cause. They can be emailed to me: PANDAS-Awareness@cox.net

 

Regarding Lyme, I would be happy to try to add something to the flyer about testing. My space is VERY limited, but I think it would be good to share information about how symptoms can mimic other conditions, such as Lyme and given the immune component, appropriate testing (Igenex ??) is important. Thanks for your input.

 

@ Vickie... I thought I sent you a link a few weeks ago to our FB page, which is on my siggy here. I'll try to check that... probably after conference.

[sf_mom]

Thanks Denise... I will PM you.

 

-Wendy