2013 PANDAS Network Funds at Work &
Come to California April 26!

4/3/2014

2013 Collective Accomplishments

Dear Pandas Network Families and Friends,

Thank you and Congratulations ALL OF US!!! Many of us donated our time and money to advance PANDAS/PANS research in 2013. To date, parents donation and fundraising efforts have raised nearly $50,000 to be used for research and advocacy efforts!

NIMH/IVIG Study closes (10/13) - results to be published
Descriptive PANS Survey (Univ of Buffalo) 740 responding (12/13) - awaiting publication
October 9th PANDAS/PANS Awareness Day proclaimed in 18 states
Partners Health Care (Massachusetts) generous donation of $20,000 to PANDAS Network
PANDAS Network Gift of $5,000 to University of South Florida, Rothman Center, Dr. Tanya Murphy
PANDAS Network Gift of $6,700 to NE PANDAS/PANS Parents Association Conference Rhode Island
PANDAS Network Dinner Acknowledging Launch of PANS Consortium, Stanford University (5/13)
First Ever PANDAS Brochures successfully launched (over 3,500 distributed)

2014 Research Gifts

Our goal is to continue to give small financial gifts to PANDAS/PANS projects with the assistance of our scientific advisory board, especially Dr. Susan Swedo. Most recently we gave Dr. Michael Cooperstock, University of Missouri ($5,000) to assist in a PANS research project using the new Moleculera Labs test.

West Coast PANDAS/PANS Conference

PANDAS Network is currently organizing the 2nd West Coast PANDAS/PANS Symposium. It will take place in the San Francisco Bay Area on Saturday, April 26th. Registration is now OPEN!

Reduced hotel room rates will be available only until Friday, April 11. So, don't wait and book your room now!

Learn more about the Symposium at:

pandasparentsymposium.blogspot.com

Legislative News

PANDAS Network has helped with information and insights on articulating PANDAS/PANS to the States of Connecticut, Massachusetts and Arizona. Diana Pohlman, PANDAS Network Executive Director, is on the literature development committee in CT along with Dr. Swedo and others.

2014 Improvements to PANDAS Network

Our small volunteer staff cannot keep up with the demand of emails and parents in need. Therefore, we are using the power of technology to improve our website to allow self-sufficiency for readers. We will streamline our site to create links to education, legislative, advocacy and fundraising tool kits. Until medical research catches up the PANS Awareness Movement rests on each of our shoulders.

October 9th PANDAS/PANS Awareness Day
Time to start thinking about it!

PANDAS Network wants you to think about October 9th PANDAS/PANS Awareness Day and use this as our lightening rod for fundraising efforts. Please start thinking about ways you can raise awareness and funds for PANDAS/PANS. We have had several individuals and collective groups of parents coordinate events and fundraising efforts in their communities and plan to provide you with ideas that anyone can implement in the coming months.

The Goal to GROW PANDAS Network

Our grassroots activities have created HUGE growth in awareness compared to seven years ago when I started this organization. A new disease model means a long and steep road towards acceptance and progress. There are countless additional things we would like to be doing beyond our current offerings, but they simply cannot happen without increased resources. Our long-term goal is to be a fully-staffed nonprofit with the capacity to carry out a full agenda of family supports, advocacy, research and educational initiatives. For now, we are pursuing grants and individual donations to tackle the challenging road ahead.

Thank you for your support.

With sincere gratitude,

Diana Pohlman, Executive Director