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Accomplishments
Major Accomplishments for Fiscal Year 2009
Research and Education
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Provided research support for the following:
- Johns Hopkins University Center for Autoimmune Disease Research, Baltimore, MD, ongoing autoimmune liver disease research and crosscutting autoimmune disease research
- Johns Hopkins University, Baltimore, MD, vasculitis research (C. Lynne Burek, M.D.)
- Johns Hopkins University, Baltimore, MD, Summer Diversity Internship Program, seven interns
- Johns Hopkins University, Baltimore, MD, autoimmune disease research (Noel R. Rose, M.D. Ph.D.)
- Massachusetts General Hospital and Harvard Medical School, Boston, MA, (Denise Faustman, M.D.)
- Feinstein Institute for Medical Research, Manhasset, NY, crosscutting autoimmune disease research (Betty Diamond, M.D.)
- University of Pennsylvania, Philadelphia, PA, autoimmune disease research (Robert A. Eisenberg, M.D.)
- University of California, Davis, CA, autoimmune disease research (M. Eric Gershwin, M.D.)
- Yale University, New Haven, CT, autoimmune disease research (Joseph Craft, M.D.)
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Education (Patient, Public, and Scientific)
- Sponsored and provided a Web cast of the 11th Annual Autoimmunity Day, Johns Hopkins University Center for Autoimmune Disease Research, Baltimore, MD, to reach researchers across the Internet
- Sponsored AARDA Autoimmune Public Forums, "What Every American Needs to Know About Autoimmune Disease," Milwaukee, WI (with Endometriosis Association); Scottsdale, AZ; San Diego, CA; and Scranton, PA (with Lupus Foundation of Pennsylvania, Pocono/NE Branch)
- Provided speaker, Sjögren's Syndrome Foundation's 2009 National Patient Conference, Bethesda, MD
- Assisted more than 400,000 inquirers approaching AARDA via telephone, e-mail, postal service, Web site, and personal contacts at meetings and conferences, by supplying information and referrals
Also sponsored, co-sponsored, or supported the following:
- National Institute of Standards and Technology :Accelerating Innovation in 21st Century Biosciences: Identifying the Measurement, Standards and Technological Challenges," Gaithersburg, MD
- Women's Health 2009: The 17th Annual Congress, Annual Meeting of American Medical Women's Association, Williamsburg, VA
- 9th Annual Meeting, Federation of Clinical Immunology Societies, "FOCiS 2009," Boston, MA
- 9th International Symposium, Vasculitis Foundation, Long Beach, CA
- 29th Annual Meeting, American Society for Reproductive Immunology, Orlando, FL
- 4th Asian Congress on Autoimmunity, Singapore
- 2009 Graves' Disease Foundation Patient Education Conference, Charlotte, NC
- 4th International Conference on NeuroEndocrine Immunology in Rheumatic Diseases, Genova, Italy
- Seattle Autoimmunity Day: "A Community Dialogue," Pat's Fund, Seattle, WA
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Awareness and Advocacy
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Awareness
- Developed and arranged for nationwide TV distribution, including the Hallmark Channel and Lifetime Television, a PSA featuring Kellie Martin, "Do You Know Your Family AQ?"
- Continued Internet distribution of "Know Your Family AQ" and "Men Get Autoimmune Diseases, Too" PSAs, resulting in widespread placement reaching more than 34 million individuals
- Continued to sponsor the National Autoimmune Awareness Campaign "What Every American Needs To Know About Autoimmune Diseases"
- Provided materials for booth displays at the National Organization for Rare Disorders, Inc. (NORD) meeting
- Provided an awareness booth and representative at the 2009 American College of Rheumatology Annual Conference, Philadelphia, PA
- Provided an awareness booth and representative at FOCiS 2009 meeting (Federation of Clinical Immunology Societies), San Francisco, CA
- Presented 30-second video "Solving the Puzzle" at the 2009 Los Angeles County Fair (reached approximately 1.3 million patrons during course of the fair)
- Made available autoimmune information on the Web (social networking programs as well as its LinkedIn group)
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Advocacy
- Worked to significantly increase autoimmune research funding at the National Institutes of Health (NIH)
- Worked collaboratively with other patient groups through the National Coalition of Autoimmune Patient Groups (NCAPG) and the International Alliance of Patients' Organizations on issues of importance to patients
- Planned and facilitated an Autoimmune Awareness Advocacy program in conjunction with the National Coalition of Autoimmune Patient Groups (NCAPG)
- Provided testimony, NIH Office of Research on Women's Health, Regional Public Hearing and Scientific Workshop, St. Louis, MO; Chicago, IL; Providence, RI
- Helped introduce and continued to advocate for H.R. 2084, the "Prevention, Awareness, and Research of Autoimmune Diseases Act of 2009 (PARAiD)
- Conducted a survey of autoimmune disease patients to determine items of importance to them regarding Health Care Reform
- Conducted an advocacy campaign for member participation in advocacy efforts, including having a designated Autoimmune Disease Awareness Month
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Administration
- Contained administrative and fundraising costs combined at only 6 percent of total expenses (up to 25 percent is considered acceptable for nonprofit organizations)
- Received $1,972,014 in contributions and in-kind services, representing 99 percent of total support and revenue (65 percent, in-kind services)
- Conducted annual Victorian Tea fund raiser to realize a profit of $63,124
- Continued to expand autoimmune education and awareness through publication of InFocus, AARDA's quarterly newsletter
- Maintained active involvement with the National Health Council
- Maintained status as a Better Business Bureau Accredited Charity, continued "Best in America" certification by Independent Charities of America, and received a Four Star Charity rating from Charity Navigator
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