New International OCD Website

[mama2alex]

Here are two email addresses for the IOCDF:

 

Jeff Szymanski, Executive Director: jszymanski@ocfoundation.org

Michael Spigler, Program Director: mspigler@ocfoundation.org

 

I'm going to start with these two and see what they say. I am suggesting that they add PANDAS info, including a link to PANDAS Network and SavingSammy website, at the top of the "OCD in Children and Teens" section, which is under "About OCD" on the home page - a very logic place to find it. I'm also going to mention the fact that they used to have a little PANDAS info (though not enough) on their old web site, and the PANDAS community is wondering why they removed it.

[mama2alex]

I just wanted to bump this to the top, especially since there's been a lot of discussion and excitement about advocacy on another thread. I have my email queued up to send out tomorrow to the executive director of the IOCDF. I will do my best to get to the bottom of this and see if they are willing to add info on PANDAS. I hope everyone else will send an email to encourage them as well.

 

Laura, Please let us know what your friend who's involved with the foundation says.

 

Thanks!

Jennifer

[LNN]

Laura, Please let us know what your friend who's involved with the foundation says.

 

Thanks!

Jennifer

 

She's on it. But won't get a response until Mon or Tues, I'm guessing. Will definitely let you know what I hear.

[mama2alex]

Laura, Please let us know what your friend who's involved with the foundation says.

 

Thanks!

Jennifer

 

She's on it. But won't get a response until Mon or Tues, I'm guessing. Will definitely let you know what I hear.

 

Great! Thank you. If a bunch of send emails this week, maybe we can get it on their radar.

[LNN]

Got a response re: the IOCDF site. They are re-creating their site in 2 phases. Phase 1 was to move the core of their information and make sure everything was up and running correctly. For phase 2, they plan to add a Pandas page. It is not their intention to remove Pandas from their site. It just wasn't included in phase 1 of the migration. My limited experience with OCDF is that they are pretty receptive to Pandas, so I don't have any reason to think they won't be true to their word.

[mama2alex]

Got a response re: the IOCDF site. They are re-creating their site in 2 phases. Phase 1 was to move the core of their information and make sure everything was up and running correctly. For phase 2, they plan to add a Pandas page. It is not their intention to remove Pandas from their site. It just wasn't included in phase 1 of the migration. My limited experience with OCDF is that they are pretty receptive to Pandas, so I don't have any reason to think they won't be true to their word.

 

Great! Thanks for checking. I'll edit my email a bit and send it anyway, just so they know someone cares about that particular content.

[thereishope]

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