Disease, Disorders, Medical Disciplines

PANDAS NETWORK-ORG NON-PROFIT TO CURE AUTO NEUROPSYCHIATRIC SYNDROM

aka PANDAS Network   |   Menlo Park, CA   |  http://pandasnetwork.org/

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.

Ruling year info

2013

Executive Director

Diana Pohlman

Main address

655 Oak Grove Avenue #1373

Menlo Park, CA 94026 USA

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EIN

37-1666562

Cause area (NTEE code) info

Pediatrics (G98)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

PANDAS/PANS and AE patients have little access to care. We raise money for basic science (neuroscience) and clinical research (evidence patient-based). Clinical diagnosis requires biomarker development. It is this important evidence that is our Ultimate Goal because it will assure rapid diagnosis and treatment.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Support for Families

We provide phone and email support for families for newly ill children. Volunteer support groups have been created nationwide. Our non-profit offers guidelines to create support groups and literature resources.

Population(s) Served
Families
Children and youth (0-19 years)

PANDAS Network works to support national parent advocates through the initiation and adoption in 2013 of October 9th Awareness Day. These created nationwide proclamations and resolutions that have led to support of insurance and advisory councils across the U.S.

Population(s) Served
Children and youth (0-19 years)
Families

We strive too advance care access for children through media campaigns including television and print. We design literature and resources for families, educators and the medical community. We advance these efforts by exhibiting at professional conferences, sharing stories of healing with the media and making resources available for parent volunteers.

Population(s) Served
Children and youth (0-19 years)
Families

Micro gifts have been granted to leading experts since 2013 to stimulate PANS consortia research. Annual gifts have gone to U of S. Florida, Harvard, Stanford, Georgetown, Columbia U, and U of MO. We seek to expand this as inquiries increase worldwide. International interest reaches globally now to Australia, Turkey, United Kingdom, and Italy.

Population(s) Served
Children and youth (0-19 years)
Families

We established the first ever PANDAS conference in 2012 in San Francisco, California. In 2018 800 people attended the Common Threads conference (Columbia U). CME for Doctors and nurses were provided. National media attention was given to this event by ABC 20/20 and Nightline. We have sponsored and co-sponsored seven conferences worldwide: U.S. (MA-2013; CA-2014; RI-2014; DC-2016; NY-2018) and, in Europe (Italy-2015 & 2016; UK-2018).

Population(s) Served
Families

Our HIPAA compliant registry will increase the awareness of how PANDAS/PANS-AE impacts the life of the patient and family. Our goal is to intercept it with the consortia registries that contain biodata. This patient registry will allow researchers and advocates around the world to track the health and outcome of our children. Ideally, a comprehensive comparison of diagnosis and treatment would be done annually to track true progress.

Population(s) Served
Children and youth (0-19 years)

Where we work

Charting impact

SOURCE: Self-reported by organization

Five powerful questions that require reflection about what really matters - results.

What is the organization aiming to accomplish?

Early diagnosis and treatment of PANDAS/PANS/AE in children and young adults. Increased research funding in the field of neuroscience, and autoimmune illness factors.

Increase awareness of the medical community and the general public. To understand the nexus between psychiatry, immunology, neurology, and mental health.

We are associated with clinics and practitioners looking at these illnesses across the globe. Columbia University in the US: Georgetown, Columbia, Stanford, Harvard, and U of Arizona are attending to patients. In the UK, Italy, and Turkey small clinics have recently opened to see patients. We require increased funding to expand their practices and their ability to accurately record case histories and outcomes as well as blood sera and psychological evaluations.

We directly communicate with the clinics and fund their research. We aim to have increased publication and reports on positive patient outcomes.

We have raised over $180,000 for research and we have held conferences (average 600 attendees) across the U.S. and globe since 2013. Our goal is to become a major source for research funding together with reputable education and training program for doctors who have the courage to investigate and heal this patient population. A patient registry is needed to quantify and record the treatment outcomes of this new patient population. We are actively researching a platform that will easily serve the patient, and allow for follow-up with patient lifetime outcomes.

Financials

PANDAS NETWORK-ORG NON-PROFIT TO CURE AUTO NEUROPSYCHIATRIC SYNDROM
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Operations

The people, governance practices, and partners that make the organization tick.

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  • Analyze a variety of pre-calculated financial metrics
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PANDAS NETWORK-ORG NON-PROFIT TO CURE AUTO NEUROPSYCHIATRIC SYNDROM

Board of directors
as of 7/7/2020
SOURCE: Self-reported by organization
Board chair

Diana Pohlman

PANDAS Network

Term: 2009 -

Heather Korbmacher

Chris Walters

Chris Schamberger

Angelique LeDoux

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes

Keywords

PANDAS, PANS, Pediatric, Autoimmune, Medical, ANS