In This Newsletter

PANDAS Network Travels to NIMH

Symposium Highlights

Symposium Photos

Coming Soon!

Friends of PANDAS Network,

We are happy to send you a newsletter filled with good news!

In this update, you will find info on an upcoming trip the NIMH and highlights of last month's PANDAS/PANS Symposium.

Thank you for your continued support in making all this happen!

The PANDAS Network Team

PANDAS Network Travels to the NIMH to Discuss PANDAS/PANS!

Members of the PANDAS Network Board of Directors will be traveling to the Washington DC area next week to discuss upcoming awareness efforts and the future of PANDAS/PANS!

Our trip will include a meeting with select members of the NIMH, including Dr. Susan Swedo and the NIMH National Outreach Partners. As a member of the NIMH Outreach Partners Program, we are excited to discuss how the organizations can compliment each others efforts and help push awareness and understanding of PANDAS/PANS forward.

We will also be meeting with PANDAS Network Board Member, Dr. Beth Latimer, to discuss topics relevant to both the parent community and the medical community. We are eager to brainstorm ideas with Dr. Latimer on how PANDAS Network can help physicians and how to fulfill our 2014 advocacy goals.

Thank you to all those who are taking time out of their busy schedules to make these meetings happen!

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Symposium Highlights

Thank you all parents, professionals and speakers for making the West Coast PANDAS/PANS Conference a success! Our goal was to advance NEW perspectives on this illness and bring some optimistic view for the future.

Videos of the presentations will be available on the PANDAS Network website in about 30 days. Special thanks to Christine Mitsogiorgakis for her donation of professional filming services.

The conference was kept to a modest size (200 people) in order to allow for dialogue in the afternoon. Drs. Swedo, Frankovich, Alarcio, Cooperstock, and Amy Smith, NP who graciously spoke with 30+ medical practitioners in a three hour Provider Breakout Session.

For parents, we tried the first-ever therapeutic sessions with two remarkable Child Psychiatrists, Drs. Thienemann and Fier. Fier eloquently (and with some hilarity! ) revealed all the facets of our family lives and personal identity shifts when this illness plays out in our children. It was difficult to hear our sorrows laid out as a group but he led us back to the strength and healing we have achieved as parents. Thienemann's warmly shared concrete coping skills with parents on how to handle OCD, rigid thinking, and anger that often comes with PANDAS. Our only regret was that both of these doctors could not speak longer.

The afternoon sessions were a NEW TWIST on PANDAS/PANS discussions - Dr. Jamie Candelaria-Greene explained school accommodations; parent advocates, Wendy Nawara (IL) and Paul G. Ryan (AZ) - explained how they will help us lead our FALL CAMPAIGN for October 9th Awareness Day activities and activism efforts with our State Legislators.

One of the best parts of the conference were stories of healing from parents and children themselves. We also had a child resolved from PANDAS play in a cello quartet during lunch hour!

Symposium Photos

click to enlarge


Speaker Q and A Drs. Alarcio, Frankovich, Swedo, Cooperstock, and Amy Smith, Nurse Practitioner	Speaker Q and A Drs. Alarcio, Frankovich, Swedo, Cooperstock, and Amy Smith, Nurse Practitioner	Dr. Margo Thienemann presenting during the the Parent Breakout Session


Provider Breakout Session led by Dr. Susan Swedo and the panel of physician speakers	Attendees and Advocates	Speakers Wendy Nawara, Sarah Jane Alleman, and Amy Smith, NP


Diana Pohlman, Executive Director, PANDAS Network	Kari Kling, Dr. Melanie Alarcio, Paul Ryan, and Walgreens Representative, Shelly Avila	West Coast PANDAS/PANS Symposium

Coming Soon!

Coming Soon! The PANDAS Network website will be getting a new look! In addition to cosmetic changes, we will be adding tool kits for your October 9th Awareness Day activities and for advocating with your Legislators!

We will also be announcing information on an ITALIAN CONFERENCE in October 2014 featuring European professionals and Dr. Susan Swedo!

Be sure to visit www.pandasnetwork.org and watch for these updates!

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