Thank you to everyone that attended the first PANDAS Parents Meeting!

Sunday, October 30, 2011

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!

Thursday, October 27, 2011

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!

Wednesday, October 26, 2011

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.

Monday, October 24, 2011

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:

    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!

    Saturday, October 22, 2011

    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!

    Friday, October 21, 2011

    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!

    Tuesday, October 18, 2011

    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.

    Saturday, October 15, 2011

    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!

    Friday, October 14, 2011

    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.

    Tuesday, October 11, 2011

    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.

    Saturday, October 8, 2011

    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.