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PANDAS Network.org

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Nonprofit Overview

Mission: PANDAS Network.org is dedicated to improving the diagnosis and treatment of children with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Armed with an impressive network of doctors, researchers and scientists, PANDAS Network.org strives to collaborate with subject matter experts, build public awareness, provide family support, and gather data and resources to better inform parents and the medical community about PANDAS and PANS.

Results: Results of our 2013 efforts include: We are proud to be the most visited website devoted to PANDAS and PANS. As of 12/9/2013, we’ve had 150,604 visits and OVER 1/3 MILLION page views! These visits were achieved through relevant web searches. New patient brochures were developed as an introduction to PANDAS and PANS. They are ideal for physician offices and newly diagnosed families. Informational postcards have been developed for use at future conferences to broaden outreach. Support group listings grew to represent half of the United States! Thank you to our Support Group Coordinator for working hard to have a support group listed in every state. Snapshots of the community were encouraged by our support of the Univ. of Buffalo / USF Online Retrospective Survey. We provided materials to physician offices informing them of the research survey and promote participation. Learn more about this survey at pandasnetwork.org/survey. Professional Networking Opportunities were provided by the PANDAS Network “dinner of appreciation” held in conjunction with the Stanford Specialist Meeting. Conference representation included an inspiring presentation by our Executive Director along with an exhibit table at the NE PANS/PANDAS Conference and a printed awareness ad at the IOCDF Conference. New partnerships were formed with the NIMH National Partnership Program and the AARDA National Coalition of Autoimmune Patient Groups. These new partnerships are in addition to our existing affiliation with NORD. ----------------------------------------------------------------------------- Affiliations: - NIMH National Partner - NORD Patient Organization - AARDA – National Coalition of Autoimmune Patient Groups - Northeast PANS/PANDAS Conference Supporter - Brain Awareness Week Partner – The DANA Foundation - Rare Disease Day Partner - Children’s Mental Heath Awareness Day Participant - PANDAS/PITAND/PANS Awareness Day Organizer - Healthwise® – PANDASnetwork.org was chosen to be on their American Self-Help Group Clearinghouse’s database for PANDAS/PANS support groups (as seen on WebMed.com) ----------------------------------------------------------------------------- Representation at conferences: - NE PANS/PANDAS Conference (2013) - IOCDF Conference (2012) - University of California, Irvine Conference: UC Irvine Autoimmune Diseases of the Nervous System - Texas A & M Symposium: Who suffers from Post-Infectious Neurological Symptoms? Why Proper Diagnosis and Research are Critical - PANDAS Parents Symposium (2012) - PANDAS Parents Meeting (2011) - Northeast PANS/PANDAS Conference (2013)

Target demographics: Children and families affected by PANDAS and PANS

Geographic areas served: A national level

Programs: Founded in 2009, PANDAS Network.org is a non-profit organization that raises awareness of PANDAS and PANS onset and course of illness by providing: - An ongoing database of new PANDAS and PANS cases. - Parent referrals to support groups and physicians. - A conduit for new researchers to navigate collaborations and new treating physicians to find information. - Online newsletters to parents and physicians about latest research. - Information that is medically accurate and reviewed by our Scientific Advisory Board.

Community Stories

26 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

PANDAS Network is dedicated to providing up to date information and resources to parents and educators, including the latest case studies, diagnostic criteria and recommended treatment protocols along with an ever growing state by state listing of treating physicians. It took us almost two years to finally get a diagnosis for our son, it is our hope that other parents will use this information and help alleviate their child's suffering from this disorder much more quickly. Thank you for your dedication to our children.

1

Client Served

Rating: 4

When my four year old daughter literally changed overnight and my family was at a loss what to do PANDAS Network got us moving in the right direction. Our psychologist had mentioned PANDAS to us as a possibility so I immediately set off to find whatever I could about the condition. This is was the most comprehensive resource out there and without it I'm not sure where we would be right now. With the information we took away we were able to get help and I am thrilled to report that our daughter is healthy and happy once again.

1

General Member of the Public

Rating: 5

My daughter was diagnosed with PANDAS when she was 8. It took a full two years for her to recover. Without the resources of the Pandasnetwork.org, I would have been lost. The organization is informed, connected to the medical community treating PANDAS and dedicated to finding answers for our kids. When I meet other families affected by PANDAS, I recommend they visit Pandasnetwork.org site for information. Thank you Panadasnetwork.org!!!

1 Heather166

General Member of the Public

Rating: 5

Like so many other parents, I was at a loss as to what was going on with my son. I am the behavior specialist for my school district and I am well aware of behavior shaping and management. I was told we needed to stop enabling our son and put more strict systems in place in our home to get him back to school. I knew that was not the case, that something had happened, but I didn't know what it was and neither did anyone else. The psychiatrist suggested OCD and I didn't see it. So I began to research to understand what I was missing. That is when I found PANS/PANDAS and the PANDAS network. The diagnostics page gave me the information I needed to take back to my pediatrician, not my psychiatrist, to request the tests to identify if in fact this was what my son had. When lab work came back positive we were overjoyed to have an answer and a pathway. We are still healing, and it is a long road, but we have answers and we have others who understand the life that we now live. We have faith for full recovery. And it is thanks to the PANDAD network that we got the answers that we needed.

1 Amy_158

Client Served

Rating: 5

PANDAS Network has been my go-to source for information since before my son was even diagnosed. It was through the list of symptoms on this site where I finally realized that my son's condition had a name. That was the same day I felt more relief than ever, learning that I was not, as doctors insisted, acting like there was something seriously wrong when in their opinion, there was not. Even now that NIMH have updated their information, PANDAS network is still my number one spot for information. Thank heavens for this organization, or we might still be trying to get the medical community to acknowledge what is going on!

1 Adam41

Client Served

Rating: 5

This was the one resource that came up when we needed them. They are a wonderful source of information, support and advocacy - everything that a good non-profit needs to be. They do this with a supportive userbase and very little resources. Amazing. Happy to say how much they helped us.

1

Client Served

Rating: 5

I can't thank PANDAS Network.org enough. My son was diagnosed in 2009. Our world was dark not knowing what had caused a sudden change in his personality, behavior and health. Once diagnosed, PANDAS Network,org was the light that shined on us giving us valuable information, support and a community of people to hold us up when we were down. Our son is doing very well now and about to graduate college. He couldn't have done this without PANDAS Network.org.

1

Client Served

Rating: 5

My typically developing and super sweet son was diagnosed 7 years ago with PANDAS. He was a fun-loving , care-free, 5 year old having the time of his life in KG...until the morning he woke up a completely different kid:( Luckily there are awesome non-profits, like PANDAS NETWORK, that make it their mission to spread the word about this debilitating and scary strep attack on the body! I refer to their site often and copy and paste their articles and info pages very frequently to share with others, including teachers to educate them on identifying PANDAS! We were blessed to figure out early that the extreme OCD, facial tics, spitting tic, hallucinations, extreme fears, constant reassurance seeking, etc, that developed overnight and took over my sons being was a strep virus gone wrong! His body's antibodies were attacking his brain instead of the strep and complete HAVOC and HELL was happening before our eyes! The diagnosis did not come from a doctor's insight. Our doctor said that was typical behaviors and NOT TO WORRY! Our diagnosis came after finding info on the web in a desperate search! Thank you PANDAS NETWORK for your constant fight forward to save ALL of our kids!!

1

General Member of the Public

Rating: 5

PANDAS is not widely known in the medical communyiy which leaves parents to do their own research. PANDAS network was there when I was searching for answers and they are there to help with education, research, & awareness. They are a valuable resource for every family that has someone suffering and they helped me get my boy back to who he was before!

1

General Member of the Public

Rating: 5

As a parent of a child with PANDAS, there is so little information out there for myself or those working with my child. PANDAS Network helps educate parents, medical providers, and educators. Thanks for getting the word out there about this little known condition.

1

Client Served

Rating: 5

I have a son who has been diagnosed with PANDAS for 4 years. This organization is such a valuable resource for parents and physicians needing information. When I met someone newly diagnosed, this is the basic resource website I give them. Great organization!!!

1

Client Served

Rating: 5

PANDAS Network provide information for parents and educators that is integral as we help our children. The group is dedicated to building awareness in the medical and educational fields. As a parent, I need all the resources I can find. PANDAS Network is a true by-the-people group that is helping thousands of children and their parents.

1 Marla4

Client Served

Rating: 5

I have 4 children diagnosed with PANDAS and this website has provided me with so much valuable information. I am extremely grateful for it.

1

Client Served

Rating: 5

With out them my daughter would not be getting the treatments she so desperately needs and would not have been properly diagnosed. Thank you for helping us deal and find treatments and advise for this life altering diseasd hat has taken a year so faf from my aughters life. We all must get together and make all states stand up and take notice.

1 Michele J.

Client Served

Rating: 5

PANDAS Network was a saving grace for figuring out what was going on with my son after 9 long years of misdiagnosis. The information and resources provided on their website are extremely useful for parents, physicians and schools. It is the first place I refer parents, teachers and even my son's physician to who are seeking more information on this illness. Their efforts to raise awareness go beyond just providing a website with information. PANDAS Network organizes conferences and symposiums to get the latest information and research to parents and physicians. I am grateful to have such an invaluable resource.

1

Client Served

Rating: 5

PANDAS Network has been invaluable to us as we start to navigate everything with our son's diagnosis. I love that there is a website where we can get up to date, helpful, correct info all in one convenient place. When you're faced with a new diagnosis and it isn't something that is widely known it can be frustrating trying to find out what to do next, but this was great!

2 Amy_153

Client Served

Rating: 5

Actually first found out about PANDAS through their website and after two grueling years of misdiagnosis, found a PANDAS friendly pediatrician on their provider list. Proper treatment with amazing results, all thanks to your useful information! Very blessed!

2

Client Served

Rating: 5

PANDAS Network was what helped me figure out over four years ago while I sat at my computer at 3am in my pajamas that what was happening to my son was likely PANDAS. I was elated to find such a comprehensive web site dedicated to this health topic. The hours spent helping parents help their children shows on every page of the web site. I have met people in this organization and been involved in events, and it is always a pleasure and an honor to work with this group. Very professional! Very knowledgeable! Very informative! I run a PANDAS Support Group, and if new parents haven't found this site yet, it is always my first recommendation, and I refer to it often for updates and news and current events.

2

Client Served

Rating: 5

The information and support provided by PANDASnetwork.org is priceless. Because PANDAS is not a widely known illness, it is extremely difficult for parents to know where to turn for help in treating and healing their children. After many, many years of struggle, our son is in remission and our entire family is joyously grateful!

2

General Member of the Public

Rating: 5

As a parent of a child who has recently been diagnosed with PANDAS after 4+ years of struggle I am thankful for this organization's information, resources and hard work on behalf of our kids. It has helped me feel like I have some sort of control in a situation that oftentimes feels hopeless and confusing. The physician who diagnosed my son knew very little about PANDAS until meeting us. He is now aware of PANDAS Network and sees it as a great advocacy group. After years of being looked at like I was crazy for thinking that my child had this, I am thankful this organization is getting the word out that PANDAS is real and the children deserve real solutions.