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THE PACE FOUNDATION
SCOTTSDALE, AZ · EIN 811542903 · Form 990EZ · FY2021 · NTEE T20 · Philanthropy & Grantmaking · Micro (<$100K) · www.pacefoundation4kids.org
revenue
$90K
expenses
$101K
net assets
$373K
employees
—
mission · from form 990

PEDIATRIC AUTOIMMUNE NEUROLOGICAL RESEARCH

profile · synthesized from sources

The PACE Foundation supports children with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), which are rare neuroimmune conditions. It collaborates with leading medical institutions to establish specialized clinics offering multidisciplinary care and advance research into diagnosis and treatment. The foundation also advocates for policy changes, educates healthcare providers, and works to expand access to care for affected children.

named programs · 3 · from sources

what they call their work

CPAE Clinic Network
Network of specialized clinics at leading medical institutions providing multidisciplinary care for children with PANS/PANDAS, including neurology, immunology, psychiatry, and infectious disease expertise
Education and Outreach Program
Programs to educate healthcare professionals about PANS/PANDAS diagnosis and treatment protocols, including distribution of clinical guidance materials
IVIG Study
Clinical research initiative to evaluate the effectiveness of IVIG treatment protocols for children with CPAE disorders
activities · 4 groups

what they do

  • CPAE/PANS Clinical Research & Care Networks 22 activities
    • Advocacy for CPAE/PANS Funding and Policy
      Secures grants, develops and monitors public policy initiatives to improve insurance reimbursement, patient access, and safety of IVIG therapy, and spearheads legislation to fund pediatric neurological autoimmune disorder research.
    • Advocacy for CPAE/PANS Policy and Funding
      Develops and monitors public policy initiatives to improve insurance reimbursement, patient access, and safety of IVIG therapy, and spearheads legislation and secures funding for pediatric neurological autoimmune disorder research.
    • Advocacy for CPAE/PANS Policy and Funding
      Develops and monitors public policy initiatives to improve insurance reimbursement, patient access, and safety of IVIG therapy for CPAE/PANS patients, and spearheads legislation to fund pediatric neurological autoimmune disorder research.
    • Advocacy for CPAE/PANS Research and Policy
      Secures grants for medical and clinical research, develops and monitors public policy initiatives to improve patient access and treatment, and spearheads legislation to fund pediatric neurological autoimmune disorder research.
    • Advocacy for CPAE/PANS Research and Policy
      Secures grants for medical and clinical research, develops and monitors public policy initiatives to improve insurance reimbursement and patient access, and spearheads legislation to fund pediatric neurological autoimmune disorder research.
    • Advocacy for CPAE/PANS Research and Policy
      Secures funding for medical and clinical research on CPAE-related diseases, spearheads legislation to fund pediatric neurological autoimmune disorder research, and develops public policy initiatives to improve insurance reimbursement, patient access, and safety of IVIG therapy for CPAE/PANS patients.
    • CPAE/PANS Research Support and Conduct
      Assists university medical centers in conducting clinical trials, supports research to improve diagnostic and treatment options for CPAE/PANS, and conducts research on postinfectious processes causing immune dysregulation and neuroinflammation in children.
    • Establishment of CPAE Centers and Clinics
      Paved the way for the opening of the first CPAE Center of Excellence at the University of Arizona and regional CPAE clinics throughout the United States, supporting these clinics to advance understanding, diagnosis, and treatment of PANS and PANDAS.
    • Establishment of CPAE Centers and Clinics
      Paves the way for the opening of CPAE Centers of Excellence and regional CPAE clinics throughout the United States, and supports clinics that advance the understanding, diagnosis, and treatment of PANS and PANDAS.
    • Establishment of CPAE Centers and Clinics
      Paved the way for the opening of the first CPAE Center of Excellence at the University of Arizona and regional CPAE clinics throughout the United States, and supports clinics that advance the understanding, diagnosis, and treatment of PANS and PANDAS.
    • Establishment of CPAE Centers and Clinics
      Paves the way for the opening of CPAE Centers of Excellence and regional CPAE clinics throughout the United States, and supports clinics that advance the understanding, diagnosis, and treatment of PANS and PANDAS.
    • Reducing IVIG Treatments for PANS/PANDAS
      Contributes to reducing the percentage of children requiring IVIG treatments for PANS/PANDAS in some regional areas.
    • Research Support for CPAE/PANS
      Assists university medical centers in conducting clinical trials and supports research to generate evidence-based data on treatment protocols and improve diagnostic and treatment options for physicians managing CPAE/PANS.
    • Research Support for CPAE/PANS
      Assists university medical centers in conducting clinical trials and supports research to generate evidence-based data on treatment protocols and improve diagnostic and treatment options for CPAE/PANS.
    • Research on CPAE/PANS and Related Disorders
      Conducts and supports research to generate evidence-based data on treatment protocols, improve diagnostic and treatment options for CPAE/PANS, and investigate postinfectious processes causing immune dysregulation and neuroinflammation in children. This includes initiating the CPAE program at the University of Arizona Steele Research Center.
    • Research on CPAE/PANS and Related Disorders
      Supports and conducts research to improve diagnostic and treatment options for physicians managing CPAE/PANS, including clinical trials, and investigates postinfectious processes causing immune dysregulation and neuroinflammation in children.
    • Securing Research Funding and Government Support
      Secured a $250,000 grant from the Arizona Department of Health Services for medical and clinical research on CPAE-related diseases, helped secure funding for a global FDA sanctioned research trial, and solidified the stature of pediatric neuropsychiatric autoimmune disorders for continued government support.
    • Support for CPAE/PANS Treatment
      Collaborates with partner organizations and medical institutions to support the treatment of children with CPAE, PANS, and PANDAS, including establishing a network of specialized clinics for diagnosis and treatment.
    • Support for CPAE/PANS Treatment and Clinical Networks
      Collaborates with partner organizations and medical institutions to support the treatment of children with CPAE and PANS, and establishes a network of specialized clinics for diagnosing and treating these disorders.
    • Support for CPAE/PANS Treatment and Clinical Networks
      Collaborates with partner organizations and medical institutions to support the treatment of children with CPAE and PANS, and establishes a network of specialized clinics for diagnosing and treating these disorders.
    • Support for CPAE/PANS Treatment and Clinical Networks
      Collaborates with partner organizations and medical institutions to support the treatment of children with CPAE and PANS, and establishes a network of specialized clinics for diagnosing and treating these disorders.
    • Support for CPAE/PANS Treatment and Diagnosis
      Collaborates with partner organizations and medical institutions to support the treatment of children with CPAE and PANS, and establishes a network of specialized clinics for diagnosing and treating these disorders.
  • Disease Awareness & Education Campaigns 4 activities
    • CPAE/PANS Disease Awareness Campaigns
      Creates awareness programs to educate patients and donors about improved treatments for CPAE-related diseases and develops disease awareness campaigns in states nationwide.
    • CPAE/PANS Disease Awareness Campaigns
      Creates awareness programs and develops disease awareness campaigns in states nationwide to educate patients and donors about improved treatments for CPAE-related diseases.
    • Disease Awareness Campaigns
      Creates awareness programs and develops disease awareness campaigns in states nationwide to educate patients and donors about improved treatments for CPAE-related diseases.
    • Disease Awareness Campaigns
      Creates awareness programs and develops disease awareness campaigns to educate patients and donors about improved treatments for CPAE-related diseases.
  • Genetic Epilepsy Research & Education 4 activities
    • Education and Awareness Programs
      Conducts education and outreach programs to increase medical community understanding of PANS/PANDAS and CPAE disorders, and develops awareness campaigns for patients and donors.
    • Education and Outreach for Medical Community and Public
      Conducts education and outreach programs to increase medical community understanding of PANS/PANDAS and CPAE disorders, and develops awareness campaigns to educate patients and donors about improved treatments for CPAE-related diseases.
    • Medical Community Education and Outreach
      Conducts education and outreach programs to increase the medical community's understanding of PANS/PANDAS and CPAE disorders.
    • Medical Community Education and Outreach
      Conducts education and outreach programs to increase the medical community's understanding of PANS/PANDAS and CPAE disorders.
  • Uncategorized 3 activities
    • Microbiome Research
      Initiated and expanded human microbiome research in high-risk populations at Dartmouth, including multi-omics and multi-directional investigations, and studies the relationship between early microbiome development and health outcomes, including neurodevelopmental and neuropsychological outcomes.
    • Microbiome Research
      Initiates and expands human microbiome research in high-risk populations, including multi-omics and multi-directional investigations, and explores the relationship between early microbiome development and health outcomes, including neurodevelopmental and neuropsychological outcomes.
    • Microbiome Research
      Initiated and expanded human microbiome research in high-risk populations at Dartmouth, including multi-omics and multi-directional investigations, to study the relationship between early microbiome development and health outcomes, including neurodevelopmental and neuropsychological outcomes.
financials · form 990EZ · fy2021
revenue
Total revenue$90K
Contributions & grants$90K100%
Program service revenue——
Investment income$310%
Other revenue—
expenses
Total expenses$101K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out$98K
balance sheet
Total assets$373K
Cash—
Investments—
Liabilities—
Net assets$373K
1 years on record · 2021–2021
relationships · 50

who they work with

  • Arizona Department of Health Services Government — Liaison relationship to promote awareness and secure funding for CPAE-related research and treatment.
  • Arizona Legislature Government — Liaison relationship to advocate for support and funding for CPAE-related initiatives.
  • Arkansas Center for Health Improvement Partner — Organization founded by Dr. Smith to advance health policy and system improvements in Arkansas
  • Arkansas Children’s Hospital Partner — Dr. Aravindhan Veerapandiyan, a Pediatric Neurologist at Arkansas Children’s Hospital, serves on THE PACE FOUNDATION's Medical Advisory Board.
  • Banner Foundation AZ Partner — Partner organization supporting PACE Foundation's mission to treat children with CPAE and PANS.
  • Banner Health Partner — Dr. Michael Daines, an Associate Professor of Pediatrics at the University of Arizona and a Pediatric Allergist-Immunologist, is affiliated with Banner Health and serves on THE PACE FOUNDATION's Medical Advisory Board.
  • Banner Health Partner — Dr. Syndney Rice, a Professor of Pediatrics at the University of Arizona and active clinician caring for children, is affiliated with Banner Health and serves on THE PACE FOUNDATION's Medical Advisory Board.
  • Brown University School of Medicine Partner — Affiliated with the school
  • CPAE/PANS Consortium Partner — Collaborates with university medical centers in the CPAE/PANS Consortium to support clinical trials and research.
  • Dartmouth CF Infant and Children Cohort Partner — Director and PI of the cohort
  • Dartmouth Children’s Center Partner — Clinical Research Director at the center
  • Dartmouth Children’s Environmental Health and Disease Prevention Research Center Partner — Director and PI of the center
  • Dartmouth University Partner — Dr. Juliette Madan, an Associate Professor, Clinical Director, and Director/PI at Dartmouth University, serves on THE PACE FOUNDATION's Medical Advisory Board.
  • Dartmouth University Partner — Hosts a CPAE/PANS Clinic.
  • Dartmouth University Partner — Hosts the Neuroimmune Psychiatric Disorders (NIPD) Clinic in collaboration with The PACE Foundation
  • Dartmouth-Brown Medical Program Partner — Affiliated with the program
  • Duke University Medical Center Partner — Institution where Dr. Daines completed his fellowship in allergy/immunology.
  • General Electric Partner — Paul Ryan's previous executive position at General Electric provided expertise to PACE.
  • Greater Regional Health Center - Iowa Partner — Hosts a CPAE/PANS Clinic.
  • Harvard University Partner — Hosts a CPAE/PANS Clinic.
  • Harvard University Partner — Hosts the Pediatric Neuropsychiatry & Immunology Clinic as part of The PACE Foundation network
  • NIH’s Genetic and Rare Diseases Information Center (GARD) Partner — Recognizes PANS and PANDAS as rare diseases.
  • NIMH Partner — Collaborated to establish standards and protocols for diagnosing and treating PANS/PANDAS.
  • National Organization for Rare Disorders (NORD) Partner — Recognizes PANS and PANDAS as rare diseases.
  • Octapharma USA, Inc. Partner — Huub Kreuwel, Vice President of US Medical Affairs at Octapharma USA, Inc., contributes expertise in immunotherapy treatments for CPAE Disorders like PANS/PANDAS to THE PACE FOUNDATION's Board.
  • Octapharma USA, Inc. Partner — Provides expertise and board leadership related to plasma therapeutics and IVIG treatments for CPAE disorders.
  • PANDAS PPN Partner — Provides informative videos on PANS PANDAS CPAE
  • Pediatric Psycho-Immunology & Neurology Group Partner — Director of the group
  • Ryan Associates Partner — Paul Ryan's founding of Ryan Associates provided expertise to PACE.
  • St. Louis University School of Medicine Partner — Institution where Dr. Daines earned his medical degree.
+ 20 more