OCD Foundation's Annual Conference

[Megs_Mom]

Hey all – the International Obsessive Compulsive Foundation is having their Annual Conference July 16, 17 & 18th in Washington DC. We went last year, and my daughter (8 now) went & loved it. She still pen pals with some of the girls she met. I made some great friends with parents & learned a ton.

 

Anyway, they have 3 different tracks of workshops – for therapists, families, and researchers. You can attend any workshop that you are interested in – I went to a lot of therapy & research tracks myself last year. This year, they have accepted 3 different PANDAS workshops (first year any have been proposed!). There will be one in the Family track, one in the Research track and one in the Therapist Track. It’s a pretty exciting line-up of speakers, so I’ll list what I know here.

 

Friday, July 16th, Washington DC – all three PANDAS workshops will be at different times.

Family Track – Dr. K is presenting, along with 2 parents in a 90 minute presentation.

Therapist Track – I am not sure about the details on this one, but I think it is headed by a parent, and that at least one of the well known docs are also on this panel. Someone will update soon, I am sure.

Researchers – This workshop will be run by Dr. Swedo (NIH), Dr. Cunningham (Oklahoma), and Dr. Leckman (Yale) – they also have a 90 minute slot.

 

This is turning out to be a great year if you want to hear experts speak about PANDAS! Here is the link to the conference, but registration will likely start late next week. I'll post again then. http://www.ocfoundation.org/Conference.aspx

[MomWithOCDSon]

Thanks! My local OCD Foundation chapter was supposed to put us on the mailing list for this information, but I hadn't received it yet. And I had thought the conference was in the Spring, rather than summer.

 

I hear really good things about these conferences in general, though we've never been; considering it, though, if affordable. Knowing now that there's a PANDAS track along with the OCD programs is definitely an added "carrot."

[smartyjones]

meg's mom - thanks so much for the info!!! i'm near dc, so very interesting. we'll have to keep in touch closer to the date about who is coming and getting together!

[MomWithOCDSon]

Meg's Mom --

 

I've checked the web site and I cannot find any programming list regarding actual speakers, PANDAS-related programming, etc., so it appears you have some "inside scoop." Do you know when/if/how information pertaining to the actual speakers and program topics will be posted? I'd like to forward it on to some others, but want to make sure they can confirm the information for themselves.

 

Thanks!

[Megs_Mom]

Meg's Mom --

 

I've checked the web site and I cannot find any programming list regarding actual speakers, PANDAS-related programming, etc., so it appears you have some "inside scoop." Do you know when/if/how information pertaining to the actual speakers and program topics will be posted? I'd like to forward it on to some others, but want to make sure they can confirm the information for themselves.

 

Thanks!

 

Pretty minor "scoop" - it should be posted by Friday of this week, maybe sooner. I'll post as soon as it is up on the site - or if you catch it first, please post. Registration & full schedule should be up by Friday. Glad you are forwarding on!

[MomWithOCDSon]

Registration is open, and what they are calling a "tentative schedule of events" is posted, as well:

 

IOCDF Program Schedule

 

It appears as though there are a few sessions that would be of interest to some folks here, such as:

 

- Dr. K with Laura Matheos and Keith Moore, "When Children Suddenly Wake Up with OCD - Could It Be PANDAS?"

 

- Cunningham and Leckman, "Sudden Onset OCD - PANDAS Research - Looking Bank & Moving Forward!"

 

- Page-Voth, Latimer, Maloney and Nicolaides, "Catching and Curing OCD: An Overview of PANDAS"

 

- Hoffman, Kothari, Moritz and Storch, "Researching OCD with Co-Morbid ADHD, Tic Disorders, and Autism Spectrum Disorders"

 

The latter three are all in the "researchers" track, while only the Dr. K. presentation is noted for "families and those with OCD," but I think, if you attend, you can attend the research track, too, can't you?

[thereishope]

Who's Keith Moore? Am I suppose to recognize the name? Is it anyone on here?

 

And who's Page-Voth?

[thereishope]

I'm just curious...am I the only one who doesn't care for the tag "catching OCD". Iworry some people will think PANDAS is contagious. I understand where the tag came from, since a child catches the strep infection, I'm just not a fan of it.

[MomWithOCDSon]

Who's Keith Moore? Am I suppose to recognize the name? Is it anyone on here?

 

And who's Page-Voth?

 

I frankly don't know; guess we could Google them. They are on the speakers' list, alongside the names more familiar to us.

[thereishope]

I'm thinking he's a parent. I'm assuming someone on here. Now my curiosity wants to know:)

[Megs_Mom]

I am not sure if these are parents and if so, if they are on the board here - and if they were, I am not sure that they would want to be associated with screen names. Most of the panels were coordinated by the lead speaker, so the parent portions are often not related. There are a lot of parents with older kids that are now coming out to talk about PANDAS more publically. But while they are showing a lot of courage, it is still obviously a very sensitive topic for a lot of people. I am not that courageous.

 

However, we can speculate all we want about Laura - as she is clearly a bold mom! And a really smart one. I've watched carefully as some parents have been very public about who they are and taken their stories forward - and they have often gotten mixed reviews. It's a tough road in a lot of ways. I'll look forward to all the presentations, and will be there in the front row cheering them all on. In the meantime, if these parents are on the board, they'll likely post. And, they may not be parents - a lot of professionals have run into PANDAS at one point or another in a close relative, and are then doing research or whatever to help. At the risk of sounding like a mom - which I am - we should leave them to their privacy.

 

There should also be a lot of great presentations about ERP tools, for those that may be interested. Those are always very helpful to me.

[LNN]

However, we can speculate all we want about Laura - as she is clearly a bold mom!

 

No need to speculate. I am just a mom - who has trouble not speaking my mind.I didn't set out to be a public speaker. Last fall a friend emailed me about Beth Maloney's upcoming interview on Teri Arranga's radio show. Since I respectfully disagree with Beth's opinions on IVIG and Pex, I emailed Teri with some information about both procedures. That led to some long phone calls and then Teri asked me to write about my family's experiences, which was published in the the Autism File in Jan. That led to a conversation about the Autism One conference and how some presentations on PANDAS might help some of the doctors and families there learn about the disease and how it could be a piece of their personal puzzles. That, in a round about way, led to a chance to give a similar presentation at the IOCDF conference.

 

So I didn't wake up one morning deciding to tell the world about our story. It evolved little by little. A year ago when Diana sent out an email about the A&E show Mystery Diagnosis, it sparked a debate about whether families would ever be willing to share their stories. At the time, I thought no way would I ever "go public". I guess never say never. But I'm no expert on PANDAS, I'm not out to become "famous". I'm just an expert on how PANDAS presents in my son and I'm only out to try to keep my grandchildren from going through the same ordeals we've gone through.

[thereishope]

I knows LLM says she's "just a mom", but she's also being modest. She not demanding popularity or praise. If people make the connection, she's okay with that but she's not screaming it at the rooftops for pats on the back. She's just helping the cause and our kids and doing a great job!

[MomWithOCDSon]

I applaud anyone and everyone who is willing to speak out. And until it's definitively proven to me otherwise, I will always assume that all of these folks . . . parents, kids, researchers, doctors . . . are prepared to do so in the best interest of all of us impacted by PANDAS, with little or no regard for personal gain.

 

There's just too much we don't know, and the personal stories vary so broadly, and the expert recommendations can vary dramatically, too. So we need to, as someone on another thread recently recommended (I think perhaps it was LLM herself), be open to all the information available, be ready to "date" it, perhaps "break up" with it and "date" something else, maybe "go steady" with it, but realize that a lasting, committed "marriage" may be a few years off yet!

 

So, in the meantime, I'll listen to everyone! And glad to have so much opportunity for some of the forum's own to step out and have their stories told!

[Megs_Mom]

I applaud anyone and everyone who is willing to speak out. And until it's definitively proven to me otherwise, I will always assume that all of these folks . . . parents, kids, researchers, doctors . . . are prepared to do so in the best interest of all of us impacted by PANDAS, with little or no regard for personal gain.

 

There's just too much we don't know, and the personal stories vary so broadly, and the expert recommendations can vary dramatically, too. So we need to, as someone on another thread recently recommended (I think perhaps it was LLM herself), be open to all the information available, be ready to "date" it, perhaps "break up" with it and "date" something else, maybe "go steady" with it, but realize that a lasting, committed "marriage" may be a few years off yet!

 

So, in the meantime, I'll listen to everyone! And glad to have so much opportunity for some of the forum's own to step out and have their stories told!

 

That was my favorite post too! I'm dating abx, but flirting on the side with IVIG. I just need to get to know him a little more .