Autism one conference

[peglem]

Is anybody who got to go pitching for our Refresh grant? How about a sign up sheet for proxy votes? We wouldn't even need names- they could be registered under pseudonyms. If we could somehow get a big influx of votes- I think we could hold onto our position- We seem to be good at holding steady.

Edited May 22, 2010 by peglem

[thereishope]

Well, I contacted Autism One about being represented there and no reply. I listed a blog entry on their site about us, but haven't checked on it in a few days. Here's the ideas I listed before about the conference. Will relist. This is a great oppotunaity to get votes! Lack of funds keeps me from going.

 

 

If you're going to the Autism One Conference later this month, it may be time to start thinking how you can represent the PANDAS community there! We have a list of ideas in the comments below. If you’re not attending the PANDAS presentations, you can still attend some FREE activities being offered. Click here for more info on the free activities. The conference may be the first time many parents first hear about PANDAS. You will be part of the bridge of information that day. How exciting!

 

Link to FREE events...

http://www.autismone.org/2010-conference-free-free-free

 

Comments

 

-Print out the voting link on cards, paper, etc and have them available to pass out should the opportunity arrise. You don't know who you may end up speaking to. Use the logo we provide or make your own link cards. Link to our logo

http://s905.photobucket.com/albums/ac251/P...omputercopy.jpg

 

-Print out the blue logo and pin it to your attire for the day to make sure everyone knows PANDAS is there and representing itself. This will also be a good way to find other PANDAS parents.

 

-If anyone is going to the free rally, have a larger 5 x 7 sign of the logo ready to hold up.

 

-It may be a good idea to have some print outs of Buster’s Fact sheet with you. If someone asks you “What’s PANDAS”. You can inform the and give them a sheet to bring home and read. Link to Fact Sheet http://www.pandasnetwork.org/busterfact.html

Edited May 22, 2010 by Vickie

[thereishope]

Autism One attendees...

 

I wanted to message each of you and ask you to print out our sign, or make a smaller version to clip to your attire, etc, but I just don't have the time. Please consider this. If it's easier for me to email you anything, message me and I will email you.

 

If you are attending the free rally, I would absolutely love to have signs represented there. Not even for voting, but to make a statement. Think about it.

[MSmom]

I am trying to decide whether to go and hear the PANDAS presentations. Will there be new info that I can't get here at this forum, or are the presentations going to be geared more toward people who are new to PANDAS?

Thanks!

Pam

[thereishope]

I really don't know. If you go to the Autism One website, I believe it gives a summary of the PANDAS presentations.

[MSmom]

Thanks Vickie. I did read the summaries, but I can't figure out whether the presentations will be very basic or will hold any new info.

Pam

I really don't know. If you go to the Autism One website, I believe it gives a summary of the PANDAS presentations.

[LNN]

I believe Dr Cunningham and Dr Swedo will give a medical explanation of what's happening in the brain

Dr Trifiletti will discuss the "non-classic" ways Pandas/Pitands can be triggered and can manifest

Dr Latimer will discuss the things she looks for in diagnosing and treating (I add a brief piece at the end about my son's symptoms and treatments to make the clinical more personal)

I believe Dr Bouboulis will discuss the immunology piece and Lynn will share her personal experiences.

Beth Maloney will speak on Sat about her story.

 

Will you learn something that you don't already know from this forum? Don't know. I know my personal goal (aside from not getting too tongue tied) is to mention those small details that make a parent say "aha" or help an autism doctor recognize things that could be Pandas. You guys probably won't learn much from me. My guess is that you'll hear things that will let you see a particular doctor's take on diagnosis and treatment. But if I had to guess, this is to help educate an audience that knows little about Pandas. Pandas 101. Probably not for those already working on their masters in the subject. But I could be wrong.

 

It looks like you may be able to see a webcast, but I don't know the details.

[laurenjohnsonsmom]

Dr. B and myself will have PANDAS Resource Network business cards to hand out. On the back they read "You DO NOT need a diagnosed strep infection to have PANDAS" and then there is a pretty detailed lists of signs and symptoms.

 

We are just finishing up our move of the website to the new server and the update. There will be a permanant link and logo to this forum on the front page of the site. I am trying to get a link to the Pepsi Refresh page. Forms to submit ideas/stories. Our two wonderful psycologists (one of which has two pandas children) will be lgin adding indormation to the coping tools area. They have had great success with helping families/pandas children on coping with OCD. We will begin the "ask the doctors" feature and the "share your story" area will begin to be populated. There's a lot more but I will keep this to a brief summary.

 

As far as conference presentations are concerned. I am particularly interested in what Swedo, Cunningham have to say as it seems we have come a long way in the PANDAS world just in the last year and wonder if this will be reflected in what they present.

 

I know if LLM's presentation is anything similar to her AurismOne article-it will be fantastic! It will be informative and something that may open the door to a new pandas parent and or doctor.

 

My presentation will focus on how PANDAS has effected our entire family starting four years ago with my son and most recently our other two daughters (not what you saw in the media). I will discuss what parents ask me every day-what we did that we think brought us the greatest success in healing. The "do's and don'ts" we learned along the way. I will be discussing how Lauren suffers from chronic infection/immundeficency and how repetative, ongoing ivig had been effective, etc.

 

Dr. B will be discussing the autoimmune role in PANDAS and how cryptic strep can hide in other areas of the body. We plan to do an open/informal

Q&A with the audience at the end of the presentation as long as time allows.

 

So, will you guys learn anything you don't already know? I'm not sure. I surprise myself everyday when I'm terracing a research paper I have read a dozen times or just editing the PRN website. There will be something that makes more sense today then maybe yesterday. If only one person walks away from these presentations with the "aha" moment that someone they care about may have PANDAS and now has a start to their journey, It will all be worth it to me.

 

Hoping I get a chance to me many more PANDAS parents at the conference. Please let me know if you're attending.

 

Lynn

 

 

 

 

I believe Dr Cunningham and Dr Swedo will give a medical explanation of what's happening in the brain

Dr Trifiletti will discuss the "non-classic" ways Pandas/Pitands can be triggered and can manifest

Dr Latimer will discuss the things she looks for in diagnosing and treating (I add a brief piece at the end about my son's symptoms and treatments to make the clinical more personal)

I believe Dr Bouboulis will discuss the immunology piece and Lynn will share her personal experiences.

Beth Maloney will speak on Sat about her story.

 

Will you learn something that you don't already know from this forum? Don't know. I know my personal goal (aside from not getting too tongue tied) is to mention those small details that make a parent say "aha" or help an autism doctor recognize things that could be Pandas. You guys probably won't learn much from me. My guess is that you'll hear things that will let you see a particular doctor's take on diagnosis and treatment. But if I had to guess, this is to help educate an audience that knows little about Pandas. Pandas 101. Probably not for those already working on their masters in the subject. But I could be wrong.

 

It looks like you may be able to see a webcast, but I don't know the details.

[laurenjohnsonsmom]

Vickie,

 

I am trying to get a link to the PEPSI Refresh on the front page of the PANDAS Resource Network site. Working with my web peeps as we speak. Also, I can plug it during my presentation and add a PowerPoint slide as well. Call me to discuss!

 

Anything I can do to help!

 

Lynn

 

Well, I contacted Autism One about being represented there and no reply. I listed a blog entry on their site about us, but haven't checked on it in a few days. Here's the ideas I listed before about the conference. Will relist. This is a great oppotunaity to get votes! Lack of funds keeps me from going.

 

 

If you're going to the Autism One Conference later this month, it may be time to start thinking how you can represent the PANDAS community there! We have a list of ideas in the comments below. If you’re not attending the PANDAS presentations, you can still attend some FREE activities being offered. Click here for more info on the free activities. The conference may be the first time many parents first hear about PANDAS. You will be part of the bridge of information that day. How exciting!

 

Link to FREE events...

http://www.autismone.org/2010-conference-free-free-free

 

Comments

 

-Print out the voting link on cards, paper, etc and have them available to pass out should the opportunity arrise. You don't know who you may end up speaking to. Use the logo we provide or make your own link cards. Link to our logo

http://s905.photobucket.com/albums/ac251/P...omputercopy.jpg

 

-Print out the blue logo and pin it to your attire for the day to make sure everyone knows PANDAS is there and representing itself. This will also be a good way to find other PANDAS parents.

 

-If anyone is going to the free rally, have a larger 5 x 7 sign of the logo ready to hold up.

 

-It may be a good idea to have some print outs of Buster’s Fact sheet with you. If someone asks you “What’s PANDAS”. You can inform the and give them a sheet to bring home and read. Link to Fact Sheet http://www.pandasnetwork.org/busterfact.html

[laurenjohnsonsmom]

what if we could set up a voting station with a couple laptops where people could vote right there!!!

 

Is anybody who got to go pitching for our Refresh grant? How about a sign up sheet for proxy votes? We wouldn't even need names- they could be registered under pseudonyms. If we could somehow get a big influx of votes- I think we could hold onto our position- We seem to be good at holding steady.

[wornoutmom]

Now THAT is a good idea!!!!!

 

 

what if we could set up a voting station with a couple laptops where people could vote right there!!!

 

Is anybody who got to go pitching for our Refresh grant? How about a sign up sheet for proxy votes? We wouldn't even need names- they could be registered under pseudonyms. If we could somehow get a big influx of votes- I think we could hold onto our position- We seem to be good at holding steady.

[chodnett]

I am going to be ther for the friday lectures. I would not miss it! All the researchers and doctors and parents in the same place. How great.

[thereishope]

Voting station has been discussed off forum before. I do not believe that will be an option. I will ask one more time then I will stop hounding people. If you are going, try to have our voting link printed to hand out. Print out the logo to hold up at the rally. Print out a smaller one to pin to your clothes. Have Buster's Fact sheet printed out. If someone asks you "what's PANDAS". You can give an overview and give them a sheet with more info. Have the latitudes site on there too. There's a list above of some ideas.

Edited May 25, 2010 by Vickie