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Accomplishments
Major Accomplishments for Fiscal Year 2008
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
• University of Southern California, "The Mouse Ortholog of LYP/PTPN22: Effect of an Autoimmune Predisposing Genetic Variant"
• Research grant, Johns Hopkins University, doctoral student, study of costs of autoimmune diseases
• Johns Hopkins University, vasculitis research
• Johns Hopkins University, Summer Diversity Internship Program, four interns
• Massachusetts General Hospital and Harvard Medical School, "Therapeutic Intervention That Reverses NOD Diabetes Followed by Pancreatic Regeneration"
• Multiple Autoimmune Disease Genetics Consortium (MADGC), North Shore University Hospital, Manhasset, NY, family data service support
• Lupus Multiplex Registry & Repository, Oklahoma Medical Research Foundation, Oklahoma City, OK, data support
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Education (Patient, Public, and Scientific)
• Sponsored and provided a Webcast of the 10th Annual Autoimmunity Day, Johns Hopkins University Center for Autoimmune Disease Research, Baltimore, MD
• Co-Sponsored with the Endometriosis Association the AARDA Autoimmune Public Forum, "What Every American Needs to Know About Autoimmune Disease," Milwaukee, WI
• Sponsored AARDA Autoimmune Public Forum, "What Every American Needs to Know About Autoimmune Disease, Amherst, NY
• Provided speaker, National Women's Health Information Center, Fairfax, VA
Sponsored, cosponsored, or supported the following:
--7th Annual Meeting, Federation of Clinical Immunology Societies, "FOCIS 2008," Boston, MA
--6th International Congress on Autoimmunity, Porto, Portugal
--"Systemic Lupus: Bringing Science to the Patient," The Feinstein Institute for Medical Research, New Paltz, NY
--2nd Moscow International Conference, "Immunophysiology: Natural Autoimmunity in Physiology and Pathology," Moscow, Russia
--8th International Symposium, Vasculitis Foundation, Rochester, MN
--28th Annual Meeting, American Society for Reproductive Immunology, Chicago, IL
--10th International Workshop on Autoantibodies and Autoimmunity, Guadalajara, Jalisco, Mexico
--16 Annual Congress: Women's Health 2008, Williamsburg, VA
--2008 National Patient Conference, "Knowledge Is the Key," Sjögren's Syndrome Foundation, Phoenix, AZ
--10th Annual Symposium on Bleeding and Thrombosis, Midwest Coag Hemostasis and Thrombosis Laboratories, Indianapolis, IN
--1st Annual Seattle Autoimmunity Day, Pat's Fund, Seattle, WA
--3rd Global Patients Congress, International Alliance of Patients' Organizations (IAPO), "Patient-Centered Health Care: Aligning healthcare systems with patients' needs around the world," Budapest, Hungary
--National Institute of Standards and Technology (NIST) Bioscience Conference 2008, Rockville, MD
• Funded Seattle Autoimmunity Day, Pat's Fund, Seattle, WA
• Published "Know Your Family AQ" tip sheet included in every inquirer packet
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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, of a PSA featuring Kellie Martin, "Do You Know Your Family AQ?"
• Saw Kellie Martin featured in an autoimmune disease message on the electronic board in Times Square, NY, and on Hallmark cable
• Continued Internet distribution of "Know Your Family AQ" PSA, resulting in more than 34 million individuals accessing/receiving/reviewing the PSA (Google, MySpace, Yahoo, Fox News, WebMD, MSN, PR Newswire, and many women's health sites)
• Implemented the national educational/awareness campaign "Men Get Autoimmune Disease, Too"
• Continued to sponsor the National Autoimmune Awareness Campaign, "What Every American Needs to Know About Autoimmune Disease"
• Granted interviews and provided materials resulting in articles published in national and local newspapers across the U.S. via the North American Precis Syndicate, generating 360 newspaper articles with a readership of 11,910,192
• Provided interviews and materials for stories in Glamour and Woman's Day magazines
• Provided materials for booth displays at the National Organization for Rare Disorders, Inc. (NORD) meeting
• Provided awareness booth at BIO 2008, Annual Biotechnology International Convention, San Diego, CA
• Provided an awareness booth and representative at the 2008 American College of Rheumatology Annual Conference, Washington, DC
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Advocacy
• Worked to significantly increase autoimmune research funding at the National Institutes of Health (NIH)
• Planned and facilitated an Autoimmune Awareness Advocacy program in conjunction with the National Coalition of Autoimmune Patient Groups (NCAPG)
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Administration
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Contained administrative and fund-raising costs at only 5.76 perrcent of total expenses (up to 25 percent is considered acceptable for nonprofit organizations)
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Received $2,310,135 in contributions and in-kind services, representing 99 percent of total support and revenue
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Continued to expand autoimmune education and awareness through publication of InFocus, AARDA's quarterly newsletter
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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
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