2015 Annual Report

Mission Statement The American Autoimmune Related AMERICAN AUTOIMMUNE RELATED DISEASES ASSOCIATION , I NC . Diseases Association, Inc., Founded 1991 (AARDA) is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through initiating, fostering, and facilitating collaboration in the areas of education, public awareness, research, and 2ANN0UA1L RE5PORT patient services in an effective, ethical, and efficient manner. Participants for AARDA's Auto- Lilly Stairs (lower center) and her "50 Cents for 50 Partha Nandi, M.D., of "Ask Dr. Nandi," with guests immune Walks represented by all Million" campaigners visit Children's Hospital, enjoying AARDA's annual fund raiser the Derby Luncheon ages, Washington DC area Boston, to distribute 100 "Strength Bunnies" and Silent Auction AARDA FY 2015: View from the Top Chairman of the Board President and Executive Director the Rev. Dr. Herbert G. Ford Virginia T. Ladd year ago I greeted ne of afflicting them as "fatigue" but perhaps AARDA Annual Report the "function-impaired." The Center, the Areaders as a newly real first such facility in the United States, elected Chairman of the Board; O joys of being has received support as an AARDA pilot and, not surprisingly, this past both President program. year has been a time of chal - and Executive lenge and growth. I am In the meantime, AARDA has Director— developed and published a white paper pleased to give you a bit of my forget the own "View from the Top" as an on biologics and biosimilars to educate paper work autoimmune organizations' leaders and introduction to the more and endless detailed view in this report. individual patients. This will enable e-mails—is them to be well informed advocates of AARDA is definitely a national viewing the organization from both the organization on the move. policies that protect patient safety issues AARDA office and the stimulating meet - related to the approval of biologics. With my own background in finance, management, com - ings around the country in which I am munity nonprofit involvement, and faith-building, I know Also, with the help of AARDA Board included. Sometimes it's easy to be dis - Advisor Stephanie Hales, we have that the foundation is important. Thus, I have been particu - couraged that no cure for autoimmune larly cognizant of the effective leadership of members of the submitted several comments to the FDA disease has been found. Then I see the regarding biosimilar patient safety issues AARDA Board of Directors, utilizing their variety of back - excitement and learning generated by, grounds in their own goal-setting and overview while draw - and CMS regarding Part D guidelines for example, AARDA's "The State of and essential benefits. ing on the Executive Director's experience and judgment. Autoimmune Disease: A National Also, from its very beginning, AARDA has sought the Summit," and I see possibilities. All this is simply a smattering of wisdom of its Scientific Advisory Board. Led initially by AARDA activities. For details, see "Major internationally known researcher Noel R. Rose, M.D., Ph.D., This National Summit featured Accomplishments for FY 2015" in this now Chairman Emeritus, the Board is chaired by highly leading physicians and researchers, plus Annual Report. respected researcher Betty Diamond, M.D. Comprised of patients and patient advocates, including our own National Spokesperson Kellie Scientific colloquia, congressional outstanding researchers representing six countries (Australia, briefings, public forums, media expo - France, Israel, Italy, Germany, and the U.S.A.), this widely Martin. Together we learned about the past and looked into "Paths for the sure, research support, establishment of scattered Board has been available in speaking, reviewing, an Autoimmune Disease Patient Registry advising, and teaching—simply ask! Future." The profound fatigue felt by many autoimmune disease patients was (ARNet), "Linking for the Cure" With this combination of advisors and mentors, plus the autoimmune walks across the country, dedicated volunteers carrying out fundraising, autoimmune discussed. We heard about a possible "mapping process" in which physicians grassroots fundraising with awareness awareness, and support across the country—and, indeed, opportunities, personal contacts—they into some other countries—we have maintained a firm and their patients try to pinpoint when the fatigue starts and what factors, like involve both "lofty" views and real peo - foundation on which to build our work in advancing ple issues. Yes, the current autoimmune AARDA's mission of "facilitating collaboration in the areas of stress, diet, and sleep patterns, may be at play. disease picture is both disheartening and education, public awareness, research, and patient services in hopeful—but always exciting. an effective, ethical and efficient manner." We heard the suggestion for a direc - From a President/Executive Director's We are grateful for the generous support of corporate tory of physicians who themselves have and foundation grants and contributions plus the equally autoimmune disease or who have family "View from the Top" and on a very valuable individual donations that have enabled AARDA to members with autoimmune disease. personal level, I'm privileged to share move ahead steadily in those stated areas. Those physicians might help educate the autoimmune fight with the many patients and others who definitely won't We are particularly pleased that we have been able to other physicians and advocate for im - proved diagnostic tools and treatments quit—and I am grateful to our many facilitate collaboration among diverse businesses and groups donors, sponsors, volunteers, and having a mutual interest in autoimmune diseases. With the for patients. These are truly patient/ in-kind contributors who make every establishment of the Autoimmune Partnership Council, offer - people oriented topics for discussion, gain possible. ing memberships to the business community and institutions exciting stuff not only for organization of learning, combined with the increasing effectiveness of the administrators but also for researchers. Just as there is "no such thing as a National Coalition of Autoimmune Patient Groups, we are What about environment and free lunch," there are no such things as encouraging a sharing of autoimmune information and goals. autoimmunity? Speakers pointed out free research, education, patient services, While AARDA and friends have a long way to go toward that over the past several decades, a sig - and awareness or the administration to achieving the eventual defeat of the category of autoimmune nificant number of autoimmune diseases facilitate them. The 50 Million Ameri - disease, we know that progress continues in all aspects of the have increased in frequency not only in cans, and others, are depending on us. fight, as interested readers can see in "Overview of Major the U. S. but also around the world. Thank you—for doing and being. Accomplishments" elsewhere in this report. Mounting evidence for the role of envi - Not listed, however, but perhaps the most important part ronment comes from a variety of sources, of our "View from the Top" is the genuine concern, the including environmental agents that can caring, shown among the supporters of AARDA's mission. alter the structure of cells, making them Even when hurting on a personal basis, AARDA's supporters appear to be foreign invaders, resulting show compassion for the 50 Million Americans—and others in either an activation or suppression of throughout the world—who are afflicted by the life-threat- the immune system. ening consequences of many of the autoimmune diseases. Speakers emphasized the difficulties in Autoimmune diseases cross the boundaries of all ages, getting an autoimmune disease diagno - genders, races, and socioeconomic levels. As we say, some - sis. Surprisingly, one roadblock may be one you know has an autoimmune disease. Is it you? Is it a the way that patients describe their Virginia Ladd, AARDA President/Executive loved one? Or is it someone else who has touched your life? symptoms. As Dr. Abid Khan, Director Director, addresses Congressional Briefing at The need for support is great. of the MidMichigan Health Autoimmune National Press Club, Washington DC, held in On behalf of the 50 Million whom we serve, I thank you Disease Center, suggested, patients conjunction with the National Coalition of for any support you have given—or will give. should not describe the chronic fatigue Autoimmune Patient Groups Report of the AARDA Scientific Advisory Board autism spectrum disorder. Another con - Biologic agents that disrupt regulatory ference was "Eosinophils, Types II Im - pathways in the immune system have munity and Autoimmune Disease" that successfully unleashed the power of the focused on this neglected area of re - immune system to combat tumors but search in autoimmune diseases. A third also, in a high number of cases, to lead meeting, "Pregnancy and Lactation in to autoimmunity. These observations Women with Autoimmune Disease," ad - highlight the importance of regulatory dressed hormonal regulation of immune checkpoints in controlling autoimmu - and autoimmune responses which needs nity and potentially suggest new to be better understood as well as the therapeutic strategies. Betty Diamond, M.D., Chair —Dr. Diamond is Center impact of transfer of maternal antibodies Studies of the microbiome and its Head, Department of Autoimmune

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