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OUR IMPACT

 

FUNDING RESEARCH

  • Gift of $30,000 from the Gold-Seelig family to MGH PANDAS clinic for future research projects (2015-6)
  • Gift of $40,000 from the Santilli Family to Dr. Tanya Murphy (USF) to investigate epigenetics in PANDAS children (2015-6)
  • Purchase of 300 JCAP journals to 140+ physicians (2015)
  • Gift of $5,000 to Dr. Latimer, Neurology to investigate Rituxumab in severely ill PANDAS children (2015)
  • Gift of $6,000 to Tim Sorel PANDAS documentary (2015)
  • Gift of $2,500 to Dr. Jennifer Frankovich (Stanford PANS Clinic) to investigate virulent strep in specified areas (2015)
  • Gift of $4,000 to Dr. Tanya Murphy (USF) for immune dysregulation research (2015)
  • Gift of $5,000 to Drs. Beth Latimer, Neurology and Earl Harley, ENT (Georgetown University) for Tonsil and Adenoid Analysis Study (2014)
  • Gift of $10,000 to Dr. Michael Cooperstock, University of Missouri  to assist in a PANS research project using the Cunningham Panel (2014/15)
  • Collaborative Support of the Univ. of Buffalo / USF Online Retrospective Survey by providing materials to physician offices informing them of the research survey and promote participation (2013)

LEGISLATIVE ADVOCACY

  • U.S. Statewide Annual PANDAS/PANS Awareness Day Resolutions assistance to parents/advocates
  • Adviser to legislators, advocates, and providers to discuss the impact of PANDAS/PANS as it pertains to their State.
  • Adviser for information and support for pending Legislation including CT, AZ, IL, CA, MA.

SCHOOL OUTREACH

  • (2014) Rhode Island Certified School Nurse Teachers Association. Board Member, Amy Smith, NP speaks at Fall Educational/Membership Meeting. Provide materials, coordinate speakers to qualify presentations for CEU credits, providing transportation for PANDAS/PANS speakers to attend.
  • (2014) Ongoing role in the CT Committee for developing materials for schools
  • (2014) Educator/Special Ed track at PANDAS Network West Coat Symposium

PROVIDER & RESEARCHER: EDUCATION & COLLABORATIONS

  • Sponsor of PANDAS Italia  Como Conference (2015)
  • Sponsor of Brown University Medical School PANS, PANDAS, and Acute-Onset Neuropsychiatric Syndrome conference (2015)
  • 200+ toys for patients at PANDAS Clinics (Stanford, Georgetown & U. of S. Florida (2015)
  • Transportation costs to Leading Researchers and Providers to speak at conferences and attend relevant meetings that help educate and push the understanding of PANDAS and PANS forward.
    This includes:
    XIX Lancefield International Symposium on Streptococci and Streptococcal Diseases (2014)
    → Italian Conference on PANDAS/PANS (2014)
    → Rhode Island Certified School Nurse Teachers Association. Fall Educational/Membership Meeting (2014)
  • Gift of $5,000 to University of South Florida, Rothman Center, Dr. Tanya Murphy (2013)
  • Education Provider/Researcher track featuring leading experts at PANDAS Network West Coast Symposium (April 2014)
  • Host of “dinner of appreciation” held in conjunction with the Stanford Specialist Meeting (2013)

FURTHERING PUBLIC AWARENESS

  • Outreach Partnership meeting with the NIMH to discuss furthering awareness and education to both the medical community and the general public (2014)
  • Gift of $6,700 to NE PANDAS/PANS Parents Association Conference Rhode Island (November 2013)
  • First ever! patient brochure and informational postcards for distribution (2013)
  • Informational pieces and educational ads at multiple conferences.
    This includes:
    → Brown University Medical School Conference and Parent Update Session
    → AACAP Annual Meeting
    → Michigan AAP Conference
    → IOCDF Conference
    → International Lyme and Associated Diseases Society Conference
  • Spearhead PANDAS/PANS Awareness Day efforts and creating a clearinghouse of information (launched 2013)
  •  PANDAS Network West Coast Symposia for parents and professionals featuring leading providers and researchers (2013/14)
  • Developed statistics and patient populations insights to aid companies in securing funding to further accurate testing and treatment of PANDAS/PANS children.

AFFILIATIONS

  • NIMH National Partner
  • NORD Patient Organization
  • AARDA – National Coalition of Autoimmune Patient Groups
  • RARE Foundation Alliance member
  • West Coast PANDAS/PANS Symposium organizer
  • 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

Members of PANDAS Network.org have had the opportunity to speak at conferences around the United States, including:

  • PANDAS Italia, Lake Como Conference (2015)
  • Rhode Island Certified School Nurse Teachers Association. Fall Educational/Membership Meeting (2014)
  • West Coast PANDAS/PANS Symposium (2014)
  • 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)
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