2015-02-13T09:38:24-06:00 2014-09-30 521511275 Raffa PC 1899 L Street NW Suite 900 Washington DC 20036 990 2013-10-01 431131436 The Lupus Foundation of America Inc LUPU 2023491155 2000 L Street NW No 410 Washington DC 20036 Sandra C Raymond President and CEO 2023491155 2015-02-13 1 Frank H Smith P00639053 2028225000 2015-02-13 2013 2016-02-25 16:41:14Z Sandra C Raymond 2000 L Street NW No 410 Washington DC 20036 12946485 0 X www.lupus.org X 1977 DC Improve the quality of life for people with lupus through research, education, and advocacy. 19 19 49 319 42785 -2000 9657896 11338917 1301854 1299910 39201 18884 67292 35835 11066243 12693546 929717 1743358 0 0 3976631 4041297 60450 118925 2570632 8253690 6756402 13220488 12659982 -2154245 33564 7078484 7495167 2867434 3255835 4211050 4239332 X The Lupus Foundation of America, Inc. (the Foundation) is dedicated to improving the quality of life for all people affected by lupus through programs of research, education, support, and advocacy. 0 0 4065892 388311 Public information and education: The Foundation continues to increase awareness and understanding of lupus and its impact on health through public awareness campaigns, media relations, online and social marketing and aggressive outreach efforts to corporate and community partners. This year, the Foundation's website, lupus.org, exceeded six million visits, meeting a growing demand for information about lupus. In addition, with more than 235,000 likes on Facebook and 24,000 followers on Twitter, the organization has the largest social media presence dedicated exclusively to lupus.The Foundation continued to see tremendous growth and interest in signature awareness campaign activities during May-Lupus Awareness Month. During that month alone, the Foundation secured 36 media stories, generating more than 15 million television impressions. Story placements included CNN, Huffington Post Live and Costco Magazine. Visits to lupus.org increased by 5 percent compared to the previous year, and, over the course of the month, more than 23 million Facebook impressions were generated. In addition to these important strategic initiatives, the Foundation continued to engage celebrities to support the cause and enhance the Foundation's ongoing communications programs and signature events. 2301770 1682794 Research: The Foundation's National Research Program continues to attack problems that, for decades, have plagued the acceleration of lupus research and understanding of the disease. The Foundation aggressively pursues strategies to increase federal, state and industry support for robust medical research efforts, facilitates strategic collaborations to address issues that are critical to progress, and provides greatly needed direct financial support to researchers through its privately-supported, peer-reviewed research grant programs, supporting scientists who are seeking a cure for lupus.Since 2009, the Foundation has been implementing specific initiatives to tackle barriers to new, safe, effective and tolerable treatments for lupus. In that effort, the Foundation has created an online portal that trains health professionals on instruments used in clinical studies and has spearheaded an effort to create a new, simplified instrument to assess disease activity in the clinic and in clinical trials. In 2014, the Lupus Foundation of America partnered with the Foundation for the National Institutes of Health (FNIH) to support a new five-year initiative that will accelerate the ability to develop new medicines for lupus and other diverse and complex diseases. The Foundation continues work on a project to pool clinical trial data (de-identified) provided by participating biopharma companies. This project continues to grow each year. Findings were presented at major scientific meetings of medical organizations and federal agencies. In 2014, the Foundation launched Lupus Science & Medicine. Owned by the Foundation and published by BMJ, a respected global provider of evidence-based medical knowledge, Lupus Science & Medicine is a peer-reviewed, Open Access, online journal that provides a central point for publication of basic, clinical, translational and epidemiological studies of all aspects of lupus and related diseases. It is the first lupus-specific Open Access journal in the world and was developed in response to the need for a barrier-free forum for publication of ground-breaking studies in lupus. In 2014, the Foundation provided new funding to award research grants that address issues of critical importance for people with lupus, including expanding our understanding of pediatric lupus, specifically in the area of pediatric lupus nephritis biomarker research, as well as through a new mechanism called LIFELINE. The LIFELINE grant was established in response to the current lupus research funding environment and the potential decline in scientific momentum and loss of current and future lupus investigators. The Foundation also awarded summer fellowships to students, launched and awarded the second Lupus Insight Prize in partnership with two other lupus organizations, and for the second year, bestowed its Career Development Award.The Foundation also supported research through its advocacy efforts. These efforts led to the following accomplishments: - Secured an additional $5.5 million, for a total of $32 million, to support the National Lupus Patient Registry conducted through the Centers for Disease Control and Prevention (CDC), becoming the largest-ever lupus research study. - Successfully advocated for the continued support of lupus research through the Department of Defense (DoD) Peer-Reviewed Medical Research Program, which in 2014 awarded three lupus research grants totaling $3.4 million. To date, the DoD has provided $17.4 million for lupus research, including funds for a study that led to the development of the first diagnostic test to help physicians determine a diagnosis of lupus. - Secured an additional $2 million, for a total of $6 million, for The Lupus Initiative, which launched in 2013 to train more doctors on recognizing the signs and symptoms of lupus and to facilitate earlier diagnosis. 1656181 60564 613352 Network support and services: The Foundation provides capacity-building services, strategic support and on-site consultation to its network of chapter affiliates, field offices, support groups, and other interested partners to serve the needs of lupus communities across the United States. In 2014, the Foundation provided on-going organizational development support and training to Chapter CEOs, staff and board members, including individualized capacity-building services, leadership of national advocacy activities (as well as training for state advocacy initiatives), leadership development through our Leadership Institute and specialized trainings for support group facilitators. A new program was developed to train qualified individuals to become support group facilitator trainers, to increase the Foundation's capacity to provide this important service across the Network. In 2014, 19 new trainers were certified through this program. The Foundation also provided tools and materials to aid the Foundation's 21 chapters and more than 267 support groups, serving hundreds of thousands of people across the United States. The Foundation continued to provide on-site and remote interim executive leadership support for chapters that experienced a CEO transition, including providing leadership throughout the search process. Additionally, in 2014, the Lupus Foundation of America Walk to End Lupus Now events brought together nearly 70,000 individuals in 60 cities across the nation to learn more about living with lupus, to increase awareness of the disease and to raise funds for the cause in their local communities. 701422 181942 Professional relations and education: The Foundation's professional education programs are designed to translate the latest research findings into public health recommendations for physicians, other healthcare professionals and their respective organizations. A national continuing medical education (CME) program, which was conducted via live events in 2013, was made available nationally via the web in 2014 to the community of providers who treat and care for people with lupus. The program focused on the latest research on lupus treatments and issues related to lupus and cardiovascular disease, cancer, and bones, and reached a multidisciplinary group of health care professionals. In addition, the Foundation continued to assess partnerships for educating the non-MD health care professional community. The Foundation continued its relationship with RN.com to update its previously successful program, completed by more than 3900 nurses and over 580 pharmacy/pharmacy technicians. The Foundation also is working with RN.com to develop a more robust educational curriculum on lupus. The Foundation continues to work with its Medical/Scientific Advisory Council to address issues of importance to the medical community that provides care to people with lupus. The Foundation also reached the medical community through the Health Care Professionals Section of the award winning Lupus Now magazine, and works with its Medical/Scientific Advisory Council to educate medical professionals from varying specialties, as well as patients and other interested consumers. 667544 73520 Patient education and support: The Foundation provides education, support and other assistance to individuals with lupus, their families and caregivers. In 2014, the Foundation responded to more than 12,000 inquiries from people seeking lupus related information and resources through the organization's national health educator support service, held public education events across the country targeted to people living with lupus, and piloted a new workshop model targeted specifically to children and their parents. Last year, the Foundation's Caregiver Task Force was established. The taskforce was created to help set priorities and provide feedback on programs, resources and services that assist caregivers as they help their loved ones better manage their own health. The Foundation has been working with the group to develop and launch key content and resources. The Foundation debuted new evidence-based, medically sound, and medically reviewed educational content, and developed audio podcasts, sponsored teleconferences, and produced and circulated Lupus Now, the only national magazine targeted to people affected by lupus. The Foundation also created an online resource to provide information about the Affordable Care Act for those constituents who needed accessible and understandable information applicable to people with lupus. The Foundation continued to produce its unique Ask the Experts series, a series of educational talks and presentations on a variety of topics deemed important by our constituents and designed to provide important information about living with lupus. This free program combines an expert Q and A with a recorded presentation and was offered in both English and Spanish. More than 13,000 people utilized this program in 2014. 1368966 255462 9392809 1 1 0 1 0 0 0 0 0 1 1 1 0 0 1 1 1 0 0 0 1 0 0 1 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 62 0 1 49 1 1 1 0 0 0 0 1 1 0 0 0 1 0 X 19 19 0 0 0 0 0 0 1 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AK AR CA CT FL GA HI IL KS KY LA ME MD MA MI MN MS NH NJ NM NY NC OK OR PA RI SC TN UT VA WI WV X X Seung-Ae Chung 2023491155 2000 L Street NW 410 Washington DC 20036 Peter M Schwab Chair 5.00 X X 0 0 0 Carol Ann Petren Vice Chair 5.00 X X 0 0 0 Keith Brunini First Vice Chair 5.00 X X 0 0 0 Conrad Gehrmann Treasurer 5.00 X X 0 0 0 Janine Allen Secretary 5.00 X X 0 0 0 Joseph A Arnold Director 1.00 X 0 0 0 Tamara Atkins Director 1.00 X 0 0 0 Judy Barlin Director 1.00 X 0 0 0 J Reeve Bright Director 1.00 X 0 0 0 Karen B Evans Director 1.00 X 0 0 0 Toni Freeman Director - until 07/2013 1.00 X 0 0 0 Gary Gilkeson MD Director 1.00 X 0 0 0 Brian Kaplan Director - until 07/2014 1.00 X 0 0 0 Merrillyn J Kosier Director - until 07/2014 1.00 X 0 0 0 Marguerete A Luter Director 1.00 X 0 0 0 Susan Manzi MD MPH Director 1.00 X 0 0 0 Stephen Rabinowitz Director 1.00 X 0 0 0 Katherine A Ruffatto Director 1.00 X 0 0 0 Kathleen Ruiz Director 1.00 X 0 0 0 Christine Smith Director 1.00 X 0 0 0 Marjorie S Susman Director 1.00 X 0 0 0 Fran Tsimoyianis Director 1.00 X 0 0 0 Randall Winston Director - until 07/2014 1.00 X 0 0 0 Seung-Ae Chung Chief Financial Officer 40.00 X 164474 0 20891 Sandra C Raymond President and CEO 40.00 X 275165 0 28083 Mary T Crimmings VP, Marketing & Communications 40.00 X 175659 0 13370 Leslie Hanrahan VP, Education & Research 40.00 X 162212 0 17873 Duane Peters Sr. Dir. Marketing & Communications 40.00 X 136435 0 18175 Kimberly A Cantor VP, Pub. Pol. & Gov't Relations 40.00 X 124884 0 11532 Kristine M Hoagland Sr. Dir. Network Development 40.00 X 101266 0 12366 Christine A Naylor National Dir. - until 11/2013 40.00 X 104027 0 9652 Mary C Schwarz Former COO - until 05/2013 40.00 X 101851 0 2150 1345973 0 134092 9 1 1 0 GLS PO Box 1450 Minneapolis MN 55486 Postage and mailhouse services 2607394 GMMB Inc 3050 K Street NW Washington DC 20007 Communications and media relations 570167 Production Solutions 1953 Gallows Road Vienna VA 22182 Postage, lettershop & mailhouse services 357216 The Kerry Group 44 Soccer Park Road Fenton OH 63026 Education tour management 239911 McMurryTMG LLC 1129 20th St NW 700 Washington DC 20036 Production, design of LFA magazine 165388 11 262754 935960 25000 10115203 3527370 11338917 Training/consulting 900099 582733 582733 Membership dues 900099 572206 572206 Publications 900099 144971 102186 42785 1299910 18884 18884 19210 19210 153500 935960 252939 -99439 -99439 Miscellaneous 900099 81813 81813 Sublease income 900099 30581 30581 List rental income 900099 3670 3670 116064 12693546 1257125 42785 54719 1743358 1743358 903033 648044 220244 34745 2460192 2108649 118484 233059 107632 91151 5607 10874 333490 293613 14971 24906 236950 196186 20573 20191 128906 125932 2705 269 31403 31403 118925 118925 1078408 880297 30923 167188 66721 39689 27032 135522 117871 5203 12448 60381 51203 2717 6461 554042 472542 24128 57372 314523 217045 4020 93458 582282 377645 5349 199288 3098 2627 139 332 13519 13519 274880 252332 6675 15873 47043 32219 10759 4065 Postage and mailhouse 2952637 1458566 17717 1476354 Printing & publications 332203 264785 1516 65902 Miscellaneous 180834 5536 173408 1890 12659982 9392809 696541 2570632 X 3717876 1769062 11085 1937729 216129 1338996 2905199 2635708 875758 1547946 334865 271097 38888 52316 1773233 789056 1235983 984177 1283998 507317 187664 157610 7078484 7495167 1059016 885511 760149 1360150 1048269 1010174 2867434 3255835 X 2800516 2285706 1303234 1622009 107300 331617 4211050 4239332 7078484 7495167 33564 -5282 0 X 0 1 X 1 0 X 9365277 9188501 12916423 9657896 11338917 52467014 9365277 9188501 12916423 9657896 11338917 52467014 3615070 48851944 72437 68194 73816 75462 69016 358925 42198 57897 137806 73274 81813 392988 53218927 6678293 0.91790 0.91370 X Schedule A, Part II, Line 10, Explanation of Other Income: Miscellaneous income - 2009 Amount: $ 42,198. 2010 Amount: $ 57,897. 2011 Amount: $ 137,806. 2012 Amount: $ 73,274. 2013 Amount: $ 81,813. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 0 104168 104168 12409852 12514020 775701 193925 0 0 659179 734392 806668 775701 2975940 4463910 62527 39951 85793 104168 292439 164795 183598 201667 193925 743985 1115978 107300 220998 4483 818 331963 107300 481 481 107300 107300 535 535 107300 107300 483 483 107300 107300 1076 1076 107300 0.00000 0.99900 0.00100 0 0 770463 224718 545745 735996 482818 253178 266774 81520 185254 984177 Private equity fund (bequeathed) 32746 F Beneficial interest in perpetual trust 224653 F Long term certificates of deposit 249918 F 507317 Capital lease obligations 19944 Deferred lease incentive 648117 Deferred rent 342113 1010174 X 12832264 -5282 144000 138718 12693546 0 12693546 12803982 144000 144000 12659982 0 12659982 Part V, Line 4: The earnings on the donor-restricted endowment are for general operations and research. The Foundation's Board approves the spending of the earnings on the endowment fund on an annual basis when it approves the annual budget. Part X, Line 2: The Foundation performed an evaluation of uncertain tax positions for the years ended September 30, 2014 and 2013, and determined that it has no material uncertain income tax positions, and accordingly, it has not recognized any liability for unrecognized income tax. Europe (Including Iceland & Greenland) 0 0 Program services Consulting 49000 North America 0 0 Program services Consulting 1000 0 0 0 0 0 0 50000 0 50000 0 0 0 0 0 0 X X X X X X X 1 The Pursuant Group 5151 Belt Line Road Suite 900 Dallas TX 75254 Event fundraising counsel 0 1001027 45218 955809 John Mini Consulting Inc 707 Savannah Road Lewes DE 199581521 Direct mail 0 793442 73707 719735 The Webster Group 5185 MacArthur Blvd NW 250 Washington DC 20016 Gala management 0 88433 88433 0 Public Interest Communications Inc 7700 Leesburg Pike Falls Church VA 22043 Direct mail telefundraising 0 9782 9782 0 1892684 217140 1675544 AL AK AR CA CO CT DC FL GA HI IL KS KY LA ME MD MA MI MN MS NV NH NJ NM NY NC ND OH OK OR PA RI SC TN UT VA WA WV WI NYC Butterfly Gala 376291 281291 95000 84003 59250 The Hon. Tom Harkin Tribute Gala 713169 654669 58500 19956 63230 26500 1089460 935960 153500 19956 147233 85750 252939 -99439 1 Albert Einstein College of Medicine 1300 Morris Park Avenue Bronx NY 10461 131624226 501(c)(3) 60000 Research grant: Collective Data Analysis Initiative Albert Einstein College of Medicine 1300 Morris Park Avenue Bronx NY 10461 131624226 501(c)(3) 45000 LFA REAL-Exploratory Study Alliance for Lupus Research 28 West 44th Street New York NY 10036 582492929 501(c)(3) 66667 Lupus Insight Prize Award Brigham and Women's Hospital Inc 4 Black Fan Circle Boston MA 02115 042312909 501(c)(3) 70000 Career Development Award Columbia University 615 West 131st 3rd Floor New York NY 10027 135598093 501(c)(3) 20000 LFA REAL-Exploratory Study Duke University Medical Center PO Box 104132 Durham NC 27708 560532129 501(c)(3) 70000 Career Development Award Emory University 1599 Clifton Road NE 4th Floor MS 1599/001/1BH Atlanta GA 30322 580566256 501(c)(3) 10000 LFA REAL-Exploratory Study FNIH 9650 Rockville Park Bethesda MD 20814 521986675 501(c)(3) 25000 AMP-RA/SLE Research Project LFA DCMDVA Chapter 1319 F Street NW Suite 305 Washington DC 20004 237448063 501(c)(3) 25600 Program grant LFA New Jersey Chapter 150 Morris Avenue Springfield NJ 07081 222107053 501(c)(3) 25600 Supporting organization start-up grant Lupus Therapeutics Inc 2000 L Street NW Washington DC 20036 464170988 501(c)(3) 231347 Supporting organization start-up grant Medical University of SC 179 Ashley Avenue Charleston SC 29425 576000722 501(c)(3) 135000 Lifeline grant Medical University of SC 179 Ashley Avenue Charleston SC 29425 576000722 501(c)(3) 10000 LFA REAL-Exploratory Study NY University 545 First Avenue New York NY 10016 135562308 501(c)(3) 135000 Lifeline Grant Oklahoma Medical Research Found 825 NE 13th Street Oklahoma City OK 73104 730580274 501(c)(3) 10000 LFA REAL-Exploratory Study The Children Hospital of Philadelphia 34th Civic Center Boulevard Philadelphia PA 19104 231352166 501(c)(3) 500000 Pediatric Lupus Nephritis Biomarker Panel The Regent of the UCLA 11000 Kinross Avenue Suite 211 Los Angeles CA 90095 956006143 501(c)(3) 135000 Lifeline Grant Yale University 47 College Street Suite 203 New Haven CT 06520 060646973 501(c)(3) 135000 Lifeline Grant 18 0 Part I, Line 2: All grant recipients are required to sign the Foundation's grant award agreement and meet the following conditions: - Meet all applicable and relevant guidelines regarding the use of animal and human subjects. - Meet all institutional policies and local, state, and federal regulations governing the conduct of research. - Submit Internal Review Board and Institutional Animal Care and Use Committee (if applicable) approval from the grant recipient's institution. - Complete and submit the "proposed budget". - Adhere to the Foundation's policy on Inventions and Discoveries. - Notify the Foundation of any publication or professional presentation based on Foundation-funded research project and provide the Foundation with electronic copies of any publication or professional presentation made possible, facilitated, expedited, or supported in any way by the award, even if developed, initiated, or finalized after the award period has expired, within 30 days of final production. - Acknowledge the Foundation in any and all publications or presentations based, partially or wholly, on or developed under the Award must, unless otherwise requested by the Foundation, with the following statement: "This research was supported by the Lupus Foundation of America, Inc." - All funds are used exclusively toward expenditures for the said research, and no amount of the research grant funds can be used to finance indirect costs. - Keep complete and accurate records on the receipt and disbursement of all award funds, and may not co-mingle any funds from other sources. Must retain all such records for a period of at least two years after the expiration date of the Agreement and the Foundation has the right to review such records upon request. In addition, all grant recipients are required to submit interim and final reports with a grant installment payment tied to report submission. The reviews the interim and final reports to confirm that the investigator achieved the original study objective. - Agree that either party may terminate the agreement for convenience upon thirty (30) days prior written notice to the other party. The Foundation reserves the right to terminate the agreement effective immediately, upon written notice, if the grant recipient (i) is unable to complete the study; (ii) materially alter the study; (iii) uses the award grant for prohibited expenses or; (iv) breaches of the agreement and fails to cure such breach within ten (10) days following recipient's or Institution's receipt of written notice thereof. - Acknowledge that neither the Foundation, the Institution, nor Investigator shall be liable for any failure to perform any obligations under the agreement if such failure results from causes beyond its reasonable control. - Acknowledge that the agreement shall be governed by the laws of the District of Columbia, without regard to its conflict of law rules. - Acknowledge that the agreement may not be assigned or transferred without the Foundation's prior written consent. X X X 1 0 0 0 0 0 0 0 0 Seung-Ae Chung Chief Financial Officer 161974 0 2500 0 0 0 15214 0 5677 0 185365 0 0 0 Sandra C Raymond President and CEO 250165 0 25000 0 0 0 22950 0 5133 0 303248 0 0 0 Mary T Crimmings VP, Marketing & Communications 173159 0 2500 0 0 0 12715 0 655 0 189029 0 0 0 Leslie Hanrahan VP, Education & Research 159712 0 2500 0 0 0 12638 0 5235 0 180085 0 0 0 Duane Peters Sr. Dir. Marketing & Communications 135335 0 1100 0 0 0 12940 0 5235 0 154610 0 0 0 Mary C Schwarz Former COO - until 05/2013 101851 0 0 0 0 0 0 0 2150 0 104001 0 0 0 Part I, Line 4a During the year ended September 30, 2014, Christine A. Naylor, National Director, Development and Special Events until November 2013, received a severance payment of $8,462. X 3485888 Fair market value X 75 22035 Fair market value X 9 19447 Fair market value 0 1 1 Part I, Line 32b: The Foundation's processing of donated securities is handled by our investment banking institution, Stifel, Nicolaus & Company, Inc. Form 990, Part VI, Section A, line 7b The chapters have the authority to vote on any proposed changes by the Board of the Directors to the Foundation's bylaws. Form 990, Part VI, Section B, line 11 The Foundation hires an independent accounting firm to prepare the Form 990. A draft of the Form 990 is first reviewed by the CFO and the final draft of the Form 990 is reviewed by both the CFO and the President & CEO. Before filing the form with the Internal Revenue Service (IRS), a copy of the final draft is distributed to the Finance Committee and the form is reviewed and approved via a telephone conference. Once approved by the Finance Committee, a complete copy of the Form 990 is provided to all members of the Board of Directors before filing the Form with the IRS. Form 990, Part VI, Section B, line 12c At the Foundation's board meeting in the fall, the conflict of interest statement and questionnaire are completed and signed by each officer, director, committee member and key employee. All conflict of interest statements and questionnaires are reviewed by the President & CEO and CFO who note any actual or potential conflicts. There have been no conflicts noted during the year. Form 990, Part VI, Section B, line 15 The Executive Committee of the Board (EC) conducts an annual performance evaluation of the President & CEO and recommends salary level changes to the Board of Directors for approval. The recommended changes are based on the most currently available comparability data from the Management Compensation Survey Study published jointly by the National Health Council and the National Human Services Assembly. Once approved, one of the members of the EC, generally the Chairman or the Treasurer, notifies the CFO of the new approved compensation arrangement for the President & CEO. All other key employees receive an annual performance review by the President & CEO and approved salary increases are documented on each individual's annual performanace evaluation form. Form 990, Part VI, Section C, line 19 The Foundation makes its financial statements available to the public upon request and by posting its annual report and providing a weblink to Guidestar on its website. The federal Form 990 and all other governing documents are available upon request. Lupus America Communities 2000 L Street NW Suite 410 Washington DC 20036 900870868 Supporting organization DC 501(c)(3) Line 11c, III-FI 0 Lupus Therapeutics Inc 2000 L Street NW Suite 410 Washington DC 20036 464170988 Supporting organization DC 501(c)(3) Line 11c, III-FI 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0