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Accomplishments

Accomplishments


Major Accomplishments for Fiscal Year 2014

What happened in FY 2014? We present an “Overview of Major Accomplishments”….

Research
• 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

Education (Patient, Public, Scientific)
• Sponsored, cosponsored, or supported the following:
–“The Microbiome and Autoimmune Disease,” Leesburg, VA
–9th International Congress on Autoimmunity, Nice, France
–16th Annual Autoimmunity Day, Center for Autoimmune Disease Research, Johns Hopkins University
–Federation of Clinical Immunology Societies Annual Meeting “FOCiS 2014″
–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
–American College of Rheumatology Annual Meeting (AARDA staffed display booth), Boston, MA
–3rd USA Science & Engineering Festival, Washington, DC
–Interdisciplinary Autoimmune Summit, Las Vegas, NV
• Launched Autoimmunity Curriculum for Elementary and Middle School Teachers
• 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 via the Patient Educator
• Provided free educational brochures and newsletters to numerous health-centered meetings and events
• Maintained Local Contact list

Advocacy and Awareness
• Continued facilitation of the National Coalition of Autoimmune Patient Groups (NCAPG)
• 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

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 (raised $66,145)
• Sponsored the AARDA Annual Fund Raiser in the Greater Detroit area ($54,877 profit)

Administration
• Appointed an Assistant Director to oversee AARDA’s national office (Michigan) in conjunction with Executive Director
• Maintained the following ratings:
–Better Business Bureau Wise Giving Alliance Charity
–Best in America Certified by Independent Charities of America
–Charity Navigator Three Star Charity
• Maintained membership and active participation in the International Alliance of Patients’ Organizations (IAPO)
• Continued to meet all Standards of 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 7 percent of total expenses (compared with 25 percent acceptable for nonprofit organizations)