Our Impact

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Our Impact

  • Donations from 2013-2019 directly funded : $357,000 in gifts to researchers and contribution to numerous professional/patient research based conferences since 2011

Legislation

We've worked diligently to raise awareness of PANDAS/PANS in the U.S. by advocating for the enactment of statewide annual PANDAS/PANS Awareness Day Resolutions. Refer to the map below for how far we've expanded in raising awareness.
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Conferences

PANDAS Network has been the sponsor of the following conferences:

  • PANDAS/PANS: Advances in Diagnosis and Treatment for Post-Infectious Auto-Immune Basal Ganglia Encephalitis (Portsmouth, NH 2019)
  • Autoimmune Encephalitis Post-Streptococcal Evaluation and Treatment: A Way Forward (Arlington, VA  2019)
  • Common Threads: Post-infectious Autoimmune Diseases of the Brain (Columbia University 2018)
  • PANDAS/PANS: An Update on Current Management and New Treatment Strategies (Georgetown University 2016)
  • PANDAS Italia, Lake Como Conference (2015)
  • Rhode Island Certified School Nurse Teachers Association. Fall Educational/Membership Meeting (2014)
  • West Coast PANDAS/PANS Symposium (San Francisco 2014)
  • NE PANS/PANDAS Conference (MGH Harvard 2013)
  • Host of first PANS Consortia Dinner, Rosewood Hotel Menlo Park CA (2013)
  • University of California, Irvine Conference: UC Irvine Autoimmune Diseases of the Nervous System (2013)
  • IOCDF Conference (2012)
  • Texas A & M Symposium: Who suffers from Post-Infectious Neurological Symptoms? Why Proper Diagnosis and Research are Critical (2012)
  • PANDAS Parents Symposium (2012)
  • PANDAS Parents Meeting (2011)

Our Financial Impact

 

  • $40,000 (2020) directed gift by anonymous donor to Columbia PANDAS Clinic for genetic investigation use
  • $53,000 (2020) University of Arizona, Pawal Kiela, Gut Microbiome and Autoantibody Identification
  • $43,000 (2020) Georgetown University and Columbia University, Dr. Earl Harley and Dr. Dritan Agalliu, Tonsil Study and Immune Cells Microbiome
  • $5,000 (2020) Gift, Mom's Sacred Healing Retreat - May 1st-3rd, San Diego, CA
  • $500 (2020) MIAAP Conference (sponsor P/P/AE group, Stand 4 Mi) - September 25th-26th 
  • $10,000 (2019) sponsorship of Medstar Georgetown Conference - October 5th
  • $1,900 IOCDF Seattle Conference Exhibitor (partnership with NWPPN) - July 31st-August 2nd
  • $50,000 (2018) directed gift by Parents of PA - Lumio Family Fundraiser to Columbia Biomarkers/BBB Impact and Whole Exome Genetics
  • $30,000 (2018) directed gift by Parents of PA - Lumio Family Fundraiser to MGH-Harvard PANDAS Clinic MRI Research
  • $7,000 (2017) directed gift by PPN & PN to New! Columbia PANDAS Clinic  for general investigation use
  • $25,000 (2017) directed gift by Santilli Family to Columbia PANDAS Clinic Dr. Wendy Vargas for CSF/T17 findings
  • $12,500 (2016) directed gift by Parents of PA - Lumio Family Fundraiser to Columbia for 48 Gene Samples of PANDAS/SC children.
  • $30,000 (2015/16) directed gift by Gold-Seelig family to MGH PANDAS clinic MRI  Research
  • $40,000 (2015/16) directed gift by Santilli Family to Dr. Tanya Murphy (USF) to investigate epigenetics in PANDAS children
  • $3,000 (2015) purchase of 300 JCAP journals to 140+ physicians nation/worldwide
  • $5,000 (2015) to Dr. Latimer, Neurology to investigate Rituximab in severely ill PANDAS children (published JCAP 2016)
  • $6,000 (2015) to Tim Sorel PANDAS documentary travel
  • $2,500 (2015) to Dr. Jennifer Frankovich (Stanford PANS Clinic) to investigate virulent strep in specified areas
  • $4,000 (2015) to Dr. Tanya Murphy (USF) for immune dysregulation research (pending publication)
  • $5,000  (2014) to Drs. Beth Latimer, Neurology and Earl Harley, ENT (Georgetown University) for Tonsil and Adenoid Analysis Study; resulting in 3 papers (2 published 2016)
  • $10,000 (2014/15) to Dr. Michael Cooperstock, University of Missouri  to assist in a PANS research project using the Cunningham Panel (pending publication)
  • (2013) Collaborative/Awareness Funding Support of the Univ. of Buffalo / USF Online Retrospective Survey by providing materials to physician offices informing them of the research survey (published JCAP 2017)
  • 2013-2016 PANDAS Network was created to help recruit patients and inspire the following study: Randomized, Controlled Trial of Intravenous Immunoglobulin for Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections

Affiliations

Affiliations

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