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22100 Gratiot Ave.
Eastpointe, MI 48021
586.776.3900
586.776.3903 (fax)


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750 17th Street, N.W.
Suite 1100
Washington DC 20006
202.466.8511


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Accomplishments

Accomplishments


Major Accomplishments for Fiscal Year 2013

Research

• Continued support of O’Leary-Wilson Autoimmune Disease Fellowship, Center for Autoimmune Disease Research, Johns Hopkins University, Baltimore, MD
• Provided grants for autoimmune research: University of California Los Angeles, CA, “Role of Sex Hormones in Regulation of Interferons Genes in Autoimmunity,” Los Angeles, CA; Johns Hopkins University, Baltimore, MD, ongoing autoimmune liver disease research and crosscutting autoimmune disease research
• Provided research support for six interns in the Summer Diversity Internship Program, Johns Hopkins University, Baltimore, MD
• Increased autoimmune disease research funding to more than $2.3 million

Education – Patient, Public, Scientific

• Sponsored, cosponsored, or supported the following:
–AARDA Public forums in St. Louis, MO; Ann Arbor, MI; Charlotte, NC; Minneapolis, MN
–15th Annual Autoimmunity Day, Johns Hopkins University, Baltimore, MD
–”Biologic Therapies V Summit: Lessons Learned from the First Decade Focusing on New Targets and Agents,” Cleveland Clinic R.J. Fasenmyer Center for Clinical Immunology and Cleveland Society of Rheumatology, Cleveland, OH
–16th International Congress on Mucosal Immunology, Society for Mucosal Immunology, Vancouver, B.C., Canada
–Conference for the Autoimmune Community, “How to Dance in the Rain,” Scleroderma Foundation and others, Madison Heights (Greater Detroit), MI
–International Society for Immunology of Reproduction Meeting, American Society for Reproductive Immunology, Boston, MA
–AARDA Autoimmune Disease Forum for Physicians, University of Michigan, Ann Arbor, MI
–Vasculitis International Symposium, Vasculitis Foundation, Philadelphia, PA
–13th Annual Meeting, Federation of Clinical Immunology Societies (FOCiS), Boston, MA
–5th International Conference on Neuroendocrine Immune Basis of the Rheumatic Diseases, Genova, Italy
–MidMichigan Autoimmune Disorders Symposium, MidMichigan Health, University of Michigan Health System, Midland, MI
• Became a source of autoimmune disease information on WebMD
• Offered “My Autoimmune Story,” a video series on AARDA’s YouTube channel
• Created and maintained social networking sites (Facebook page, twitter account)
• Expanded disease-specific information on Web site
• Published quarterly lay-friendly newsletter, InFocus
• Maintained 24-hour toll-free request line
• Provided referrals and non-medical information during office hours via the Patient Educator
• Made available informational brochure and PowerPoint presentation of AARDA’s “Risk/Benefit” study
• Provided free educational brochures and newsletters to numerous locally sponsored health centered meetings and events

Awareness

• Featured in independent supplement from Media Planet to the Washington Post
• Continued “3-Second Adherence” Public Service Campaign explaining AARDA’s “Risk/Benefit” study and available materials
• Provided national awareness materials for March as National Autoimmune Disease Awareness Month
• Provided display and representatives, American College of Rheumatology Annual Scientific Meeting, Washington, DC
• Provided awareness booth and representative at Biotechnology Industry Organization (BIO) International Convention, Boston, MA
• Continued to promote “We Are 50 Million” awareness campaign via social networking channels
• Made public outreach to patients, seeking their personal stories to feature on www.aarda.org
• Provided radio and magazine interviews
• Had online news stories prompted by fund raisers in Washington, DC; Marietta, GA; Manhattan, NY; Louisville, KY; St. Louis, MO; Grand Rapids, MI; Memphis, TN; Teaneck, NJ; and Detroit and Dearborn, MI.
• Provided personal interviews and appearances to promote Autoimmune Walks

Advocacy

• Held Congressional Staff Briefing, “Women and Autoimmune Disease–the Truth About Care, Access, and Treatment,” in collaboration with National Coalition of Autoimmune Patient Groups, Washington, DC
• Was included in a BBB Wise Giving Alliance Seal Holders full-page ad in USA Today, “Dear Mr. President and Members of Congress”: letter–Don’t Push Charities Over the Fiscal Cliff
• Had article published in The Sentinel Newspapers, “Marylanders deserve low-cost biotech, high safety standards,” by AARDA Executive Director Virginia Ladd
• Editorial published in the Baltimore Sun, “The Biosimilar Debate: Losing Sight of What’s Really at Stake,” by former AARDA Board member and current Advocacy Committee Member Abby Bernstein
• Accepted invitation to join the Coalition for Accessible Treatments (encouraging patients and physicians to ask lawmakers to support and cosponsor the Patient’s Access to Specialists Act of 2013 (HR 460)
• Accepted invitation to join the Alliance for Safe Biologic Medicines
• Continued to distribute the AARDA-published white paper, “The Cost Burden of Autoimmune Disease: The Latest Front in the War on Healthcare Spending”
• Continued to work for the reintroduction and passage of HR 6218, to establish an Autoimmune Diseases Interdepartmental Coordinating Committee
• Continued to work in collaboration with other organizations on the following: Reauthorization of the Prescription Drug User Fee Act, NIH research funding, Essential Health Benefits, Independent Payment Advisory Board (IPAB), Medicare and Medicaid issues, Fight Fraud First, and protection of charitable contribution deduction
• Advocated for “Access to Specialist” in Affordable Health Care Act
• Continued involvement in issues surrounding access to specialty treatments in Virginia, New York, and Vermont
• Continued researching essential benefits offered by several states, such as California, which have opted out of the Federal Program
• Had an op-ed piece (written by AARDA Executive Director Virginia Ladd) concerning essential benefits that ran in The Hill’s Congress Blog
• Signed onto coalition letter in New York on access to specialty treatments

Fundraising

• Sponsored 13th Annual Fund Raiser, Derby Luncheon & Auction at the Dearborn Inn, which earned $57,739 for AARDA, Dearborn, MI
• Continued the AARDA Autoimmune Disease Awareness Walks program with walks in New York, California, Illinois, DC, Kentucky/Indiana, Missouri, and Michigan; plus “virtual” walks around the country, with more than $70,000 contributed
• Continued a “grassroots fundraising” support system, including an online Grassroots Newsletter

Administration

• Maintained the following ratings:
–Four Star Charity Rating with Charity Navigator
–Better Business Bureau Wise Giving Alliance Charity
–Best in America Certified by Independent Charities of America
• Remained recognized Member Organization of Health & Medical Research Charities of America
• Continued to meet all Standards of National Health Council and maintain long-time membership
• Continued standing in Combined Federal Campaign (CFC)
• Held combined management and fundraising costs at 7 percent of total expenses (25 percent acceptable for nonprofit organizations)
• Continued to facilitate the National Coalition of Autoimmune
Patient Groups
• Maintained membership and active participation in the International Alliance of Patients’ Organizations

 

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