AARDA's Major Accomplishments for 2015

  • Sponsored five Johns Hopkins University students in the summer Diversity Student Internship Program
  • Continued campaign to fund a National Autoimmune Diagnostic and Triage Centre
  • Continued to develop the Autoimmune Registry Network (ARNet)
  • Continued research support for the following:
    • O’Leary-Wilson Autoimmune Disease Fellowship, basic autoimmune research, Johns Hopkins University, Baltimore, MD
    • Autoimmune liver research, Johns Hopkins University, Baltimore, MD
    • “Role of Sex Hormones in Regulation of Interferon Genes in Autoimmunity (SLE),” University of California, Los Angeles, CA
    • Role of the innate immune system in lupus, The Feinstein Institute for Medical Research, Manhasset, NY
    • Pilot study, Autoimmune Diagnostic and Triage Center, MidMichigan Physicians Group, University of Michigan, Midland, MI
    • Project to map and identify the specificity of newly created monoclonal antibodies to TNGR2 for the expansion of human Tregs, “Young Investigator” grant, Massachusetts General Hospital, Charlestown, MA
    • “Neutrophil Extracellular Traps Regulate Autoreactive T Cell Responses,” Johns Hopkins University, Baltimore, MD
    • “C1g-based therapeutic opportunities to block HMGB1 and RAGE in SLE,” Feinstein Institute for Medical Research, Manhasset, NY

(Patient, Public, Scientific)

  • Sponsored, cosponsored, or supported the following:
    • “The Microbiome and Autoimmune Disease,” Leesburg, VA
    • Continued presence at the International Congress on Autoimmunity
    • Annual Autoimmunity Day, Center for Autoimmune Disease Research, Johns Hopkins University
    • Federation of Clinical Immunology Societies (FOCiS) Annual Meeting
    • AARDA public forums, “What Every American Needs to Know About Autoimmune Disease,” St. Louis, MO; Charleston, SC; Los Angeles, CA; Midland, MI; Atlanta, GA
    • “How to Dance in the Rain,” Conference for the Autoimmune Community,Scleroderma Foundation Michigan Chapter and others, Grand Rapids, MI
    • Continued presence at the American College of Rheumatology Annual Meeting (AARDA staffed display booth)
    • 3rd USA Science & Engineering Festival, Washington, DC
    • Interdisciplinary Autoimmune Summit, Las Vegas, NV
    • Scientific Meeting, Novel Cellular Pathways in Autoimmunity, Washington, D.C.
  • Continued to distribute Autoimmunity Curriculum for Elementary and Middle School Teachers, at no charge
  • Continued as a source of autoimmune disease information on WebMD
  • Continued to offer “My Autoimmune Story” video on AARDA YouTube channel
  • Maintained social networking sites (Facebook page, twitter account)
  • Published quarterly lay-friendly newsletter InFocus
  • Made available informational brochure and PowerPoint presentation of AARDA’s “Risk/Benefit” study
  • Maintained 24-hour toll-free request line
  • Provided referrals and non-medical information during office hours
  • Provided free educational brochures and newsletters to numerous health-centered meetings and events
  • Continued facilitation of the National Coalition of Autoimmune Patient Groups (NCAPG)
  • Expanded membership in the Autoimmune Partnership Council (APC)
  • Co-sponsored with the NCAPG a news briefing at the National Press Club, Washington, DC
  • Unveiled plans to create a new, first-of-its-kind National Autoimmune Disease Registry
  • Conducted a Web-based survey to collect data on how the Affordable Care Act is affecting autoimmune disease patients
  • Provided interviews and information for news media
  • Resumed work on development of AARDA’s “Advocacy Tool Kit” with designated grant
  • Received national recognition through the awarding to AARDA President/Executive Director Virginia Ladd the 2016 Research and Hope Award for “Advocacy and Activism” by the Pharmaceutical Research Manufacturers of America (PhRMA).
  • Continued development and information gathering for a first-of-its-kind National Autoimmune Disease Registry
  • Cosponsored Capitol Hill Congressional Briefing (“Step Therapy and Related Patient Concerns”), Washington, D.C.
  • Compiled data collected from a Web-based survey on how the Affordable Care Act is affecting autoimmune disease patients
  • Provided interviews and information for news media; had major advertisements and articles (or acknowledgement) in national publications, including
    • Delta Sky magazine,
    • USA Today Sports “Super Bowl 50” edition,
    • Modern Women,
    • Crain’s Detroit Business, and
    • an autoimmune disease insert in USA Today

Fundraising

  • Continued to encourage and provide support for “grassroots fundraising,” including the online Grassroots Newsletter
  • Expanded the Autoimmune Disease Awareness Walks schedule and provided support for establishment of Virtual Walks
  • Sponsored the AARDA Annual Fund Raiser in the Greater Detroit area
  • Maintained the following ratings:
    • Charity Navigator Four Star Charity
    • Better Business Bureau Wise Giving Alliance Charity
    • Best in America Certified by Independent Charities of America
  • Maintained membership and active participation in the
    • International Alliance of Patients’ Organizations (IAPO)
    • Continued to meet all Standards of Excellence of the National Health Council and maintain long-time membership
    • Continued standing in the Combined Federal Campaign (CFC)
    • Remained recognized Member Organization of Health & Medical Research Charities of America
    • Held combined management and fundraising costs at less than 10 percent of total expenses (compared with 25 percent acceptable for nonprofit organizations)