NE Conference in Review &  

Share a Gift of Gratitude
November 2013 
Dear Families,

The PANDAS/PANS community had a resounding success with last week's NE Conference.  The NE PANDAS/PANS Parents Association (made up entirely of parent volunteers) worked incredibly hard to hold this event with 400+ parent attendees and 40+ medical attendees. THANK YOU for this historic step forward for this syndrome!  A special thank you to Kim Panton, the master mind behind the conference. We support your ongoing efforts in 2014.

 

We highlighted at the conference for the need to raise funds for research and recognition. Please see below our "Holiday Gift" campaign that you might consider as a gifting option this year.

 

With Sincere Appreciation,

PANDAS Network .org Board of Directors

 

NE PANS/PANDAS  
Conference in Review 
By Diana Pohlman, Executive Director 

 

As I stood up and faced 400+ PANDAS/PANS parents, I was overwhelmed with the reality that our "virtual community" was in reality before me! Our community has had a presence at other conferences before but never our own place to meet and discuss without reservation.  We had a common language of a journey that has been wrought with both incredible heartache and hope.  It felt like coming home and I felt greater confidence in the outcome for my children's future good health.    

 

I was gratified to see practitioners and researchers: Drs. Swedo, Latimer, Walters, Trifiletti, Cunningham and Agalliu - presenting solid statistics of blood/antibody evidence, treatment and outcome.  Their candid review of case histories and treatments gave us hope that they care and will focus on our children.  The treatment evolution has begun for PANDAS/PANS.

 

 

Special Holiday Offering!

 

 

A donation of $20 or more will send this "Wishing Flower"

card and message to your someone special. 

 

 

 

Click here for more info

    

Select Conference Presentations and Summaries Available

To view powerpoint slides posted by select presenters and a sample of summaries, please visit: 

pandasnetwork.org/ne-conferencehighlights

 

We encourage you to also inform your provider of these resources. A note to hand to your practitioner can be found at:

pandasnetwork.org/neproviderletter2013

 

DVDs of the conference will be available at a later date.  

 

Filming of the Conference
for DVD Purchase

Professional filming staff volunteered their time to create a permanent record of the conference.  It will take a few months to synthesize the 40+ hours of film.  We encourage you to purchase them for yourself and your practitioner! 

Thank you to Christine Mitsogiorgakis, inspired parent/filmmaker who made this possible with no budget!!!

 

Christine says she could not have accomplished this without the love and help of:   

Bob Grisanti , cameraman and director of photography. Emile Last, from NY Life insurance who donated his equipment.  Other equipment came from parents; Tom Talbot recorded the screens with equipment donated by Boston Camera.  Ken Blando brought lighting and his camera from his company Pulse productions and Sally Plone brought her directing talents. 

 

Fill Out and Hit SUBMIT -
The PANDAS/PANS Survey

Community Voice is Essential


We must reach 500 respondents by December 2013 so we can review and publish findings in a major medical journal.  We are at 430 responses. 
This survey articulates Onset, Treatment and Outcome.  PLEASE fill it out whether child has healed or not.   This is the only record of our children's voices as a whole - this will go a long way for doctors and researchers to see that our outcry is real.

Be sure to hit "SUBMIT" at the end of the survey so the computer captures your answers.   

     

A special thank you to Dr. Jan Tona, Univ. of Buffalo, Dr. Tanya Murphy, Univ. of South Florida, Dr. Denise Calprice-Whitty, epidemiologist, and Dr. Heather Lindstrom, epidemiologist.

 

Our Immediate Action

PANDAS Network.org Patient Brochures



We have created a brochure for doctor offices that defines early onset of PANDAS and PANS, possible treatments and support for the family. These brochures will be available for purchase on the PANDAS Network .org website in the very near future.

 

At the most recent board meeting, Dr. Susan Swedo said that we must make an all out effort to capture the attention of those experiencing the early onset of PANDAS and PANS.   

 

 

Call to Action   

We are at a Tipping Point!


The PANDAS Network .org website had 140,000+ views in 2013, yet only a very small portion of those viewers are accounted for.

 

We need each and every one of those viewers to go the website, SIGN UP for the newsletter, and choose to fill out the optional case information. Make a STAND FOR RECOGNITION.

 newsletter block 2013 

  

Treatment and recognition of this alarming pediatric illness will not progress without NUMBERS of parents being accounted for.  In 2014 PANDAS Network.org will repeatedly stress a CALL TO ACTION designed to create one voice! Where there is a large outcry, there are donors, research dollars and ACTION.  We cannot advance without more families willing to step forward.

 

Gift Donation
In This Issue
Conference in Review
Special Holiday Offering!
Presentations and Summaries
Filming of the Conference
Fill Out and Hit SUBMIT
Our Immediate Action
Call to Action
Quick Links
PANS Survey
Support Groups
Provider List
Board of Directors
Diana Pohlman

Vickie Blavat

Dr. Beth Latimer
Amy Smith, NP, MS
Maggie Gold-Seelig, Esq.
Cathy Witkos
Hayley Kamin Flack

Advisor to the Board:

Dr. Susan Swedo