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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.
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Washington DC 20006
202.466.8511


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Accomplishments

Accomplishments


Major Accomplishments for Fiscal Year 2012

Research

• Continued research support for the following:

–Johns Hopkins University, Baltimore, MD, Summer Diversity Internship Program, six interns

–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, O’Leary-Wilson Autoimmune Disease Fellowship (three-year commitment)

–The Feinstein Institute for Medical Research, Manhasset, NY, “Immunological resetting by HSC transplantation for SLE treatment”

–University of California, Los Angeles, CA, “Gene Therapy of Primary Biliary Cirrhosis”

–Virginia Polytechnic Institute and State University, Blacksburg, VA, “Differential expression of microRNAs and sexual dimorphism in autoimmune diseases”

• Continued to surpass the $2 million mark in funding for autoimmune disease research

–Johns Hopkins University, Baltimore, MD, ongoing autoimmune liver disease research and crosscutting autoimmune disease research

–Massachusetts General Hospital, Charlestown, MA, “Phase II BCG Human Clinical Trial to Reverse Type 1 Diabetes”

• Contributed support for “Nano in Brain Study,” Paris-EST University

 Education – Patient, Public, Scientific

• Produced a video on the immune system and autoimmune disease (introduced at the 2nd USA Science & Engineering Festival, Washington, DC)

• Sponsored, cosponsored, or supported the following :

–Public forums in Madison Heights (Greater Detroit), MI; Detroit, MI; Portland, OR; Denver, CO; Miami, FL

–14th Annual Autoimmunity Day, Johns Hopkins University, Baltimore, MD

–International Alliance of Patients’ Organizations Global Patient Conference, “Achieving Patient-Centered Health Care: Indicators of Progress and Success,” London, UK

–2nd USA Science & Engineering Festival, Washington, DC (had information booth and activities)

–AARDA Satellite Symposium, “Vaccine Safety: Evaluating the Science,” in conjunction with 8th International Congress on Autoimmunity

–8th International Congress on Autoimmunity “New Diagnostic Tools & New Therapeutic Avenues in Autoimmune Diseases,” Granada, Spain

–AARDA Satellite Symposium, “Sex, Gender, and Autoimmunity Through the Lifespan,” in conjunction with the Clinical Immunology Society 2012 Annual Meeting, Chicago, IL

–Society for Women’s Health Research, round table, “Sex and Gender-Specific Environmental Exposures and Mechanisms in Autoimmune Diseases,” Washington, DC

•Reached 50,000 health care professionals with an article, “Autoimmune Disease: America’s Silent Health Crisis,” published in Case in Point

• Created and maintained social networking sites (online patient forum, Facebook “like” page, blog, twitter account)

• Expanded disease-specific information on Web site

• Expanded basic educational autoimmunity program on our Web site to include vasculitis and rheumatic diseases modules

• 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

• Conducted a “Risk/Benefit” study, resulting in an informational brochure and production of a PowerPoint presentation

 Awareness

• 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 California, North Dakota, and Illinois

• Provided material for TV and radio stations in North Dakota

• Provided personal interviews and appearances to promote Autoimmune Walks

Advocacy

• Held Congressional Staff Briefing, in collaboration with National Coalition of Autoimmune Patient Groups, with theme of “America’s Silent Health Crisis,” Washington, DC

• Distributed the AARDA-published white paper, “The Cost Burden of Autoimmune Disease: The Latest Front in the War on Healthcare Spending”

• Participated in the work of the Strategic Planning Committee of the NIH National Institute of Environmental Health Sciences

• Continued to work with Congresswoman Ann Marie Buerkle (R-21st NY) on 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 the New York State issues on drug issues

 Fundraising

• Sponsored 12th Annual Victorian Tea which earned $63,000 for AARDA, Dearborn, MI

• Launched the national Autoimmune Disease Awareness Walks program with walks in New York, California, Illinois, DC, Indiana; plus “virtual” walks around the country

• Established 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 Accredited Charity

–Best in America Certified by Independent Charities of America

–Member Organization of Health & Medical Research Charities of America

• Continued to meet all Standards of National Health Council and maintain long-time membership

• Continued to facilitate the National Coalition of Autoimmune Patient Groups

• Maintained membership and active participation in the International Alliance of Patients’ Organizations

• Held combined management and fundraising costs at approximately 7 percent of total expenses (25 percent acceptable for nonprofit organizations)

 

 

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