Thank you from one of the organizers...

As one of organizers of the PANDAS Parents Meeting, I wanted to take a moment to thank everyone who attended our event two weeks ago. Since my first introduction to PANDAS in 2008 when my own child became ill, I have devoted a good amount of time to online forums, research, and advocacy. Yet, the PANDAS Parents Meeting was the first time I actually ever met another PANDAS parent face to face! It truly shows the strength we have as a community and our determination to let nothing get in the way of getting our children better and helping others.

By meeting parents at the meeting, it put faces to those I have known over the internet for years. It made me feel even more a part of a community.

Some have asked if we plan on doing this again. Organizers have briefly discussed it, but nothing is solidified yet. After months of planning the 2011 meeting, we are still closing the book on this one and may take a break before thinking of another. We will definitely keep everyone updated.

We have seen an increase in people wanting to do get togethers on smaller levels and asking for advice. This is wonderful! If you have any questions, please feel free to ask. Our email will stay open and still get checked. We hope to put together an easy to follow "how to" handout with what had to go into planning and the reality of funding, organizing, what we may do different, etc.

This has been a great learning experience and a great leap into an even more organized PANDAS movement.

Thank you!

Vickie

Additional Summaries are Now Available

Thank you to the Canary Party's Indiana leader for presenting at the PANDAS Parents Meeting on November 5th. The summary of Cecilia Coble's presentation is now available.

The Canary Party by Cecilia Coble

As mentioned in earlier posts, we also have a number of other summaries available. Be sure to check them out on the right side of our website!

Summaries are Beginning to be Posted

Summaries of some the presentations are already posted. Please be patient as we work on the rest.

Please click on the summary you wish to be brought to. They can also be found on the right side if this blog...

• Who We Are: Survey Results by Sarah Alleman 
• PANDAS: A Parents Briefing on Trends, Hope and Next Steps by Amy Joy Smith, NP
• The Road Less Traveled by Elizabeth Eberhardt
• GUTPro™ by Organic 3

A Sampling of Photos

PANDAS Parents Meeting would like to share a sampling of photos from the day. Please note any group shots have been purposely blurred for privacy reasons. Click on photos to enlarge.

Sign that welcomed parents

Gift Bags

Door Prizes

Our Meeting

Post Meeting

Organizers

Welcome Video

PANDAS Parents Meeting is happy to share it's opening video from the event...

This video can be found on YouTube.

That's a Wrap!

WOW! Yesterday was the first PANDAS Parents Meeting and it was PERFECT!

Thank you to all those who organized and presented:

Vickie Blavat
Sarah Alleman
Tammy Thweatt
Dan Corrigan from Organic 3
Leslee Bassett
Amy Joy Smith, NP
Elizabeth Eberhardt
Cecilia Coble

Thank you to all those that attended as well. We had a cross section of most of the country with parents from Wisconsin, Illinois, Indiana, Ohio, Kentucky, Mississippi, Tennessee, New Jersey, Michigan, and California! This proves no matter how far apart we are, we all have the same focus...getting our children better and keeping them healthy!

The empowerment in the room cannot be explained. The parents that attended were determined to connect and share information. 

The organizers of the PANDAS Parents Meeting will work on summarizing the day's events and share it with everyone soon. We want to make sure those that were not able to attend, have the opportunity to learn from what was shared as well.

Thank you again!

The Big Day is Almost Here!

Organizers at the PANDAS Parents Meeting have worked hard for months and the BIG DAY is almost here! Check out our countdown on the right side of the screen....ONE day, some odd hours, minutes and seconds!!!!

We have our speakers lined up. Gift bags ready to go. Pamphlets printed out. And a building excitement that can hardly be explained!

We look forward to meeting all the attending parents on Saturday. For those that are not able to make it, we do plan on doing a write up post meeting.

Safe travels to everyone!

Vickie, Sarah, and Tammy

Don't forget...Meeting is in the EASTERN Time Zone!

Many of our parents will be traveling from different states to attend the PANDAS Parents Meeting. Make sure to remember that Indianapolis is in the EASTERN TIME zone.

Also, that same weekend Daylight Savings Time will end on Sunday, November 6th. This will mainly affect those staying overnight from Saturday to Sunday. Remember to change your clock Saturday NIGHT before you go to bed. You get an extra hour of sleep going into Sunday morning. This will help with hotel check out!

Change in Plans? Can't Come? Let us Know!

Life happens. We all know that. This is especially the case in the life of a PANDAS family.

If you RSVP'd for the PANDAS Parents Meeting and you are no longer able to attend, please drop a note and let us know at PandasParentsMeeting@gmail.com. Your unused seat can be given to one of the lovely parents on our waiting list.

Thank you!

Our Press Release

Our official press release is now available!

First of its kind PANDAS Parents Meeting to be held in Indianapolis, IN on November 5, 2011 

Three parents have organized a first of its kind meeting for other parents with children affected by PANDAS: Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococci.

Online PR News – First of its kind PANDAS Parents Meeting to be held in Indianapolis, IN on November 5, 2011.

Indianapolis, IN — November 5, 2011 — Imagine if your happy, carefree child suddenly turned into an anxiety-ridden, obsessive, and rage-filled stranger scared to let you out of his sight, and you don’t know why it happened. You hope it is just a phase, but it isn’t, and doctors are little help. You search for an explanation and find the answer: PANDAS.

On November 5th, a group of parents from all over the United States who have experienced this terrible nightmare will gather in Indianapolis for the first ever PANDAS Parents Meeting. The meeting capacity of 50 filled, as RSVPs came from various states. For many mothers and fathers attending the meeting, it will be the first time they have met another parent dealing with the struggles of PANDAS.

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococci. Symptoms of this condition can appear after a strep infection and include obsessions, compulsions, tics, anxiety, rages, ADHD, and more. PANDAS is complex and can be isolating for families. It is a rollercoaster ride of ups and downs due to symptoms and behaviors the children exhibit. Additionally, cases are scattered geographically, and many doctors are unfamiliar with the condition. Networking on the Internet is a real comfort to PANDAS parents, but this in-person event will give inspiration and hope many still need to continue the journey of recovery. It will allow parents to share a meal, form personal relationships, forge stronger support systems, and learn tips to help aid in the care of their PANDAS child .

The meeting is being planned by three parents of PANDAS children: Vickie Blavat of Cincinnati, OH; Sarah Jane Alleman of Lexington, KY; and Tamara Thweatt of Indianapolis, IN. These mothers have never met but formed a strong bond online while working for the recovery of their kids. The planners rely on email and Facebook for most communications. Funds for the event were raised online, with donations from families and friends, and by securing a sponsor, Organic 3—maker of GUTPro™ Custom Probiotics. Promotion for the meeting has been done with online forums, social networking, and a blog created for the event.

All speakers at the event are parents who will share different aspects of their personal stories in dealing with PANDAS. One of the presenters will be Elizabeth Eberhardt, author of Out of the Fog, Into the Light, which chronicles her family’s ordeal when her son developed PANDAS as a teenager. The e-book is available on Amazon.com and barnesandnoble.com.

To view the rest of the online press release, click here.

Presentations Announced!

We are happy to finally share our list of presentations for the first of its kind PANDAS Parents Meeting!

Our presentation list of Parent Advocate Speakers includes:

• Elizabeth Eberhardt
• Amy Joy Smith, Nurse Practitioner
• Impact on the Family Presentation
• Leslee Bassett
• Cecilia Coble

We couldn't be more excited about this list of empowering Parent Advocate Speakers. This will surely be an afternoon of inspiration, motivation, and hope!

Final Call for Contributors!

WOW! Two weeks left to the PANDAS Parents Meeting!!!!

If your company or organization was thinking of contributing a door prize or items for gift bags, please note that there are only two weeks left to the meeting. All contributors will be recognized for their participation. We appreciate all the wonderful things we have already received.

If you would still like to contribute a door prize item or items for the gift bags (50 of each item would be needed), please email organizers at PandasParentsMeeting@gmail.com.

Time is running out. Don't miss your chance to have your company or organization be part of this one of a kind day!

Reserve Hotel Room by 10/22 for Discounted Rate

Just a reminder to anyone still needing to reserve a room at the Hilton Garden Inn Indianapolis Airport.

A room block has been set aside at the hotel under the name PANDAS Parents Meeting. To secure the discounted rate, please book online or call (317) 856-9100 by Saturday, October 22, 2011.

Still hoping to attend the meeting? Currently, we are at full capacity for the meeting. If you would like to be placed on the waiting list, please send an email to PandasParentsMeeting@gmail.com. Thank you!

Maximum Capacity...Waiting List Formed

Just wanted to let everyone know that we are currently at our maximum capacity for the meeting. This means that all 50 seats are filled for the for the first ever PANDAS Parents Meeting! We are now forming a waiting list. If you still hope to attend, please send an email to PandasParentsMeeting@gmail.com. In the event a seat becomes available, we will contact the waiting list names on a first come, first serve basis.

Thank you to all those who have made this meeting possible, including our in part sponsor Organic 3.

The Countdown to November 5th Begins!

Thank you to everyone who has RSVP'd for the first of its kind PANDAS Parents Meeting!

We currently have an impressive 46 people attending! Our focus now turns to the countdown to the big day...November 5, 2011. That's less than one month away! We can't wait!

Last Day to RSVP!

Today is the last day to RSVP!

Wow, this has sure been an exciting whirlwind of planning! We can hardly believe that October 14th is here already! If you've been  thinking about emailing us at PandasParentsMeeting@gmail.com and haven't gotten around to it yet, there really isn't much time left....or many spaces left. If you RSVP, you will get a response email from us confirming your spot. If you don't see it within 24 hours, check your spam folder. We check our email very regularly.

In the event we reach our seating limit, we will begin a "stand by" list. You will know if you are on stand by. If someone informs us that plans have changed and they are unable to attend, we will begin to contact people who are on the waiting list. Again, we do currently have some seats left, but we will be reaching a full house very shortly.

After today, we begin to watch the countdown clock until November 5, 2011! That's only 22 days away!

If you have questions about the PANDAS Parents Meeting, you may find the answer on this blog, on the online invitation, or you can always email us at PandasParentsMeeting@gmail.com.

Questions You May Have as the Day Approaches

What time is the meeting?

The meeting is scheduled to begin at 12 noon Eastern Time-4pm on November 5, 2011.

How should I dress?
There is no dress code. Just dress comfortably. 

What is the cost?
NOTHING. PANDAS Parents Meeting is happy to offer this event for FREE thanks to Organic 3 and the multitude of donors that helped make this event possible (please see left side of website for donor lists). This includes a complimentary lunch. 

What am I to expect at the meeting?
This meeting will consist of casual mingling/getting to know other parents of PANDAS children, a complimentary lunch, and presentations that we feel parents of PANDAS children would benefit from. As cited on the invitation, this is a "parent based" event in which speakers and attendees will be parents. 

Is anything happening after the meeting?
Some parents are staying in Indianapolis for a few hours afterwards or staying overnight. This is separate from PANDAS Parents Meeting, but we will be happy to help parents find others they can socialize with that evening, if they are interested. 

Is there parking available at the meeting site?
Yes. Hilton Garden Inn Indianapolis Airport has FREE parking. 

I’m flying to the meeting. How do I get to the hotel?
Hilton Garden Inn Indianapolis Airport has it mentioned on their website that they offer a shuttle service to and from the airport. 

Can I bring my PANDAS child(ren)?
This event is an “adult only” meeting due to some of the content that may be discussed. We will not be offering child care or activities. 

Are spaces still available?
As of 10/11/11, spaces are still available. We suggest reserving a spot as soon as you are sure you will be able to attend since seating is limited. For information on how to reserve a seat, please view our online invitation.

The Importance of a PANDAS Parents Meeting

For some parents, PANDAS Parents Meeting will be the first time they ever meet another PANDAS parent. The exchange of information among parents is key to understanding this disorder. Hearing from those who have been through what you're going through, gives strength to continue the journey.

By gathering on November 5th, we are showing support for one another. We are letting others know they are not alone. We are not as rare as many of us were once told. This meeting allows actual conversations (not just typed words) to be shared.

As we collect RSVP's, we are reading how this is the first time many will meet another PANDAS parent. We forsee this being an emotional day. It will reinforce that this is our realty and give motivation to keep fighting for everyone out there.

For those interested in attending the first ever PANDAS Parents Meeting on Nov 5, 2011, please view our online invitation. This meeting is FREE to attend. A RSVP is required.

*PANDAS Parents Meeting is sponsored in part by Organic 3, makers of GUTPro™ Custom Probiotics. We are very thankful to them and all other individuals and organizations that donated, helping make this event possible. Please view the left side of this website for lists of all those who are helping make this day a success.

Two Weeks Left to RSVP!

Make sure you don't miss the first ever
PANDAS Parents Meeting!

Meet other parents!
Enjoy a complimentary lunch!
Be in the running for amazing door prizes!
And more!
We can't share all our plans with you, we need to have some surprises...

PANDAS Parents Meeting will take place on Saturday, November 5, 2011 from 12-4 pm EST at Hilton Garden Inn Indianapolis Airport. Full information can be found by viewing the online invitation.

Those interested in attending this FREE event, need to RSVP by October 14, 2011 by contacting organizers at PandasParentsMeeting@gmail.com.

We hope to hear from you!

Still Waiting to Hear from Us? Check Your Spam Folder

If you're waiting for a response from PANDAS Parents Meeting and your inbox remains empty, be sure to also check out your SPAM folder. It may be sitting there just waiting for you to open it.

Correspondence will come from PANDAS Parents Meeting at PandasParentsMeeting@gmail.com

Meet Other Moms and DADS!

Calling all Dads out there! This is not a "Mom-Only" Meeting! We've been collecting RSVP's for the upcoming PANDAS Parents Meeting on November 5th and are very happy that Dads have RSVP'd too!

It's perfectly okay if only one parent comes (we know someone may have to take care of the kids), but if both parents wish to come, that's fantastic!

When you RSVP by October 14th at PandasParentsMeeting@gmail.com just tell us if you are sending the RSVP for one or two people.

ps...Dads, sorry if we ruined your plan of saying you can't come cause you'd be the only guy there :)

Our List of Contributors is Growing!

Have you noticed the number of companies contributing to PANDAS Parents Meeting? Well...it's growing! If you haven't noticed yet, check out the left side bar of our blog. You will see the names of companies that have made monetary donations and/or donated item(s) for door prizes and gift bags. Click on any of them to learn more about the company.

PANDAS Parents Meeting is very appreciative to those that have given to our event. Next time you're at the store or shopping online and see these brands, remember they are companies that care about us and our children.

If your company, organization, or yourself would like to give to the door prizes, gift bags, or make a monetary donation, please contact us at PandasParentsMeeting@gmail.com!

If you're interested in attending PANDAS Parents Meeting, don't forget to view the invitation for event information and rsvp by October 14, 2011 to secure a spot.

A Few Details Revealed!

PANDAS Parents Meeting has already been asked what to expect at this event. We are happy to say that part of the meeting will include a COMPLIMENTARY lunch! This was made possible by the generosity of many personal donations and the sponsorship of Organic 3, makers of GUTPro™ Custom Probiotics. As for presentations and speakers, we are finalizing this as we speak. We can say there will be discussions on topics that affect us as a community and areas that may affect each of us on a personal level. As stated on the invitation, this is a “parent based” event in which parents will be the speakers. Who knows the challenges PANDAS parents face and the obstacles we have to overcome more than the parents themselves. We are confident that meetings like the first ever PANDAS Parents Meeting will add credence to the fact that parents of PANDAS children are still devoted to the furthering the cause and are becoming more united than ever!

Welcome!

Welcome to the new PANDAS Parents Meeting blog! This will help keep those interested up to date on the upcoming event. We'll list what to expect, what companies have generously donated funds or items, and we may ask readers for their opinions on topics. We are very excited to be able to share this information with all of you. It has been a busy month of initial planning and we think all attending will enjoy it!

Thanks for joining our blog. We can't wait to meet you in November!

Vickie, Sarah, and Tammy
PANDAS Parents Meeting Organizers