EIN 58-2492929

Lupus Research Alliance (ALR)

IRS 501(c) type
Num. employees
Year formed
Most recent tax filings
The Alliance for Lupus Research (ALR) is an American voluntary health organization based in New York City whose mission is to find better treatments and ultimately prevent and cure systemic lupus erythematosus (SLE or lupus).
Also known as...
Alliance for Lupus Research; Alliance for Lupus Research
Total revenues
Total expenses
Total assets
Num. employees

Program areas at ALR

Research:the Lupus Research Alliance (lra) is the largest non-governmental, non-profit funder of Lupus Research worldwide. The organization aims to transform treatment by funding the most innovative Lupus Research, fostering diverse scientific talent, and driving discovery toward better diagnostics and improved treatments. Lra-funded Research is leading to key discoveries that are improving diagnosis and therapies while advancing toward prevention and ultimately a cure. The organization's Research committee of the board of directors and scientific advisory board include top scientific experts, and key lay members of the board, who work with staff to strategically guide and drive the Research funding agenda. Since its inception, the lra has committed over $245 million to fund Lupus Research projects. In 2022 alone, over $17,000,000 was awarded in grants for highly innovative projects with the potential to improve treatment as well as understand the causes of Lupus and thus lead to a cure. Below is a summary of Research grants and programs funded by the lra in 2022: 1) 3 global team science awards were awarded for $3 million for a total of $9 million over two years. These awards will fund multidisciplinary, collaborative and highly synergistic projects that push the boundaries of innovation and bridge Research and clinical efforts in Lupus. The teams will focus on unraveling human Lupus heterogeneity with the aim to discover new avenues to personal treatment approaches; 2) 7 Lupus innovation award grants were awarded totaling over $2 million over two years, this program provides early-stage support for exceptionally creative and innovative approaches to major challenges in Lupus Research; 3) 4 Lupus mechanisms and targets awards totaling $2.4 million to support established investigators focused on characterizing Lupus pathogenesis and identifying and validating molecular pathways or druggable targets that could lead to new or improved therapies.4) the pace of funding in the diversity in Lupus Research program gained momentum 2022 by funding the following: a. 4 administrative diversity supplement grants to promote diversity in Lupus Research were awarded totaling approximately $120,000. These awards fund highly qualified and promising underrepresented minority trainees to support their Research experiences aligned with an lra parent award. B. 3 grants were awarded to researchers in the career development award program that aims to foster the development of outstanding, underrepresented minority scientists and establish a diverse community of researchers and clinicians in the field of Lupus, the program provides up to $600,000 over four years to talented underrepresented minority scientists.c. 2 postdoctoral grants fellowship grants which provide fellows with up to $170,000 over two years to support the generation of data and progress needed to become independent Lupus researchers.5) the distinguished innovator award program provides outstanding scientists with substantial support to conduct highly innovative Research to uncover the underlying causes of Lupus, 2 distinguished innovator awards for a total of $2 million were awarded over four years to highly qualified investigators to complete the proposed work.6) the Lupus insight prize was awarded for $100,000. This award recognizes a leading researcher who has made a major contribution to the field. 7) continued funding for two grants as part of our partnership with other organizations focused on finding common mechanisms in autoimmune diseases. The lra's unique funding model supports promising Research efforts with the goal of improving the lives of people with Lupus in the near future. Through a competitive peer-review process projects by the lra aim to translate results from the Research bench to the bedside as quickly as possible. Because the Lupus Research Alliance's board of directors funds the administrative and fundraising expenses, 100% of all other contributions goes to support the lra's Lupus Research programs.
Public policy:the main goals of the Lupus Research Alliance public policy program are to: educate members of congress about issues of priority to the Lupus community; increase federal funding for Lupus Research by increasing overall national institutes of health (nih) funds and secure additional funding for Lupus Research through other key federal agencies including the department of defense (dod); and ensure the patient voice is incorporated in the drug development process. Volunteers across the country help amplify these outreach efforts.through the Lupus Research Alliance ongoing public policy program efforts, significant funding for Lupus Research has been obtained under the department of defense (dod) congressionally directed medical Research programs (cdmrp) operated by the army medical Research and materiel command. First, the Lupus Research Alliance was responsible for persuading congress to include Lupus in its list of designated diseases eligible for funding in the peer reviewed medical program. In 2017, Lupus Research Alliance advocacy efforts succeeded in the establishment of the Lupus Research program under the cdmrp. Over the program's first three years, $5 million was allocated each year specifically for Lupus; through the Lupus Research Alliance's continued efforts, this amount was increased to $10m in the fiscal year (fy) 2020 defense appropriations bill and has continued at that level through fy 2023. Over seven years, $55m was secured under this program, and the lra has requested an increase to $15m for fy 2024.the lra collaborated with the Lupus and allied diseases association (lada) and Lupus foundation of america (lfa) in 2017 on the Lupus patient-focused drug development (pfdd) initiative. This effort culminated in a report designed to provide the food and drug administration (fda) with perspectives from people with Lupus, advocates, and caregivers to help inform the fda's decisions and oversight during the drug development and review processes. The lra continues to work to bring the voice of the community to the drug review process by responding to relevant calls from the fda for comments including those focused on ensuring clinical trial participants represent the real-world demographic characteristics of people living with the disease. The lra has worked with members of congress to include language in the report that accompanies the agriculture-rural development-fda funding bill for fiscal year 2022 and 2023.ongoing advocacy focuses on ensuring legislation that secures the federal funding support necessary to afford investigators the resources to follow through with Research discoveries that will improve the understanding of and treatment for Lupus. Every year, the lra trains and organizes advocates from across the country to meet with legislators on capitol hill. The goal is to increase awareness of Lupus and the impact it has on people's daily lives to members of congress and to request their support for increased funding for Lupus Research from federal programs such as the nih and cdmrp.
Scientific programs:lupus Research Alliance's (lra) scientific program continued to grow in 2022. This growth was spurred by building on established programs and finding ways to continue to expand while creating opportunities for collaboration with different sectors. An example of this year's accomplishments are listed below: collaborated with lra Research committee of the board and scientific advisory board to continue to implement efficiently our Research strategy into important scientific tools, programs, and partnerships and move closer to achieving lra's mission. Launched the diversity in Lupus Research program by funding five inaugural grant awards. Solidified the scientific strength and potential of the global team science award by funding three additional teams representing five continents and tackling a breadth of key issues in Lupus from cognitive impairment, disease remission, gut microbiome, and ancestral drivers of disease. Establishment of a public private partnership with the fda on Lupus called the Lupus accelerating breakthroughs consortium (Lupus abc). Continued to establish key infrastructure components of the Lupus nexus (lra's Lupus registry and biorepository) the clinical study protocol (the Lupus landmark study). Working with Lupus therapeutics, Lupus nexus will capitalize on current strategic opportunities in the Lupus field by enabling a collaborative, data-driven platform for the Research community. The vision for the Lupus nexus is to transform Lupus Research and drug development through unprecedented information exchange capabilities. The platform will provide a collaborative solution that is inclusive of diverse patient populations disproportionately affected by Lupus. The Lupus nexus will be a source of highly curated data to catalyze global collaboration, Research innovation, and precision medicine approaches to accelerate Lupus Research and drug development. Expanded lra's Research portfolio with new, innovative, and potentially impactful Research projects: two distinguished innovator awards, four Lupus mechanisms and targets award, and seven Lupus innovation awards. Also further optimized the Lupus insight prize program to stimulate the submission of a robust pool of compelling nominations. Maintained a strong engagement of the Lupus industry council through the Lupus abc, Lupus nexus, and the bicla/sri-4 project. The latter was presented at the november 2022 annual college of rheumatology meeting. As part of the lra's commitment to cross-sector and cross-discipline partnerships to foster the most innovative and productive Research environment, bolstered lra's convening power and spearhead new thinking about a key area in Lupus Research by organizing and convening a highly successful scientific meeting on the "impact of ancestry, race, and racial inequalities on Lupus." Continued to nurture collaboration by hosting internal and external meetings. This included Research committee meetings where members of our board of directors as well as top-level researchers discussed our portfolio and upcoming strategic steps; scientific advisory board meetings where highly regarded scientific advisors review grant application submissions and discuss future and overall Research strategy for the organization; grant specific study sections where invited researchers discussed and reviewed applications submitted to the lra. The lra founded Lupus therapeutics, llc as an affiliate of the lra in 2018 to run lucin to advance clinical trials and facilitate the development of much needed new Lupus treatments. The lra committed over $4.3 million in 1-year grants in 2021 to continue funding thru 2023 of top academic centers to foster clinical trial participation in lucin. Lupus therapeutics (lt) is committed to delivering customized services and by partnering with and leveraging the experts within our north american-based Lupus clinical investigators network (lucin) and those impacted by Lupus, lt strives to optimize engagement and drive results. Lt customized services are focused on engaging the Lupus patient and scientific community as key contributors to drug development endeavors to increase the probability of study success. Lt's value proposition includes -broad footprint within the Lupus patient community -partners with >200 Lupus kols and north american academic centers of excellence -financial and community incentives for sites that prioritize lucin-sanctioned studies -accelerated study start-up timelines and support throughout study conduct -facilitation of relationships and mutual trust between sites and sponsors

Grants made by ALR

GranteeGrant descriptionAmount
The Feinstein Institutes for Medical ResearchLupus Research$3,390,307
Yale UniversityLupus Research$1,029,380
St Jude Children's Research HospitalLupus Research$929,380
...and 28 more grants made totalling $9,796,131

Who funds Lupus Research Alliance (ALR)

Grants from foundations and other nonprofits
Bloomberg PhilanthropiesTo Support Advancement of Lupus Research$14,400,000
National Philanthropic TrustHealth$1,133,250
Willard T.C. Johnson FoundationGeneral Support$750,000
...and 112 more grants received totalling $19,506,190

Personnel at ALR

Albert RoyChief Executive Officer and President$336,203
Debra RoseVice President and Chief Financial Officer$226,160
Andrea O'NeillVice President and Chief Development Officer$278,423
Teodora StaevaVice President and Chief Scientific Officer$319,513
Penelope MitchellVice President of Communications$186,455
...and 9 more key personnel

Financials for ALR

RevenuesFYE 12/2022
Total grants, contributions, etc.$18,375,553
Program services$1,232,995
Investment income and dividends$2,017,764
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$435,041
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$638,138
Total revenues$22,699,491

Form 990s for ALR

Fiscal year endingDate received by IRSFormPDF link
2022-122023-09-15990View PDF
2020-122021-09-23990View PDF
2019-122021-03-01990View PDF
2018-122019-10-29990View PDF
2017-122018-11-15990View PDF
...and 8 more Form 990s
Data update history
November 12, 2023
Posted financials
Added Form 990 for fiscal year 2022
November 8, 2023
Updated personnel
Identified 1 new personnel
October 25, 2023
Used new vendors
Identified 4 new vendors, including , , , and
October 25, 2023
Received grants
Identified 7 new grant, including a grant for $15,076 from The Blackbaud Giving Fund
August 20, 2023
Received grants
Identified 82 new grant, including a grant for $14,400,000 from Bloomberg Philanthropies
Nonprofit Types
Grantmaking organizationsDisease research fundraisersMedical research organizationsCharities
HealthDiseases and disorders
Political advocacyProvides grantsConducts researchLobbyingFundraising eventsPeer-to-peer fundraisingOperates internationallyNational levelReceives government fundingEndowed supportCommunity engagement / volunteeringGala fundraisersFundraising races, competitions, and tournamentsTax deductible donations
General information
270 Madison Ave Suite 300
New York, NY 10016
Metro area
New York-Newark-Jersey City, NY-NJ-PA
New York County, NY
Website URL
(212) 218-2840
Facebook page
Twitter profile
IRS details
Fiscal year end
Taxreturn type
Form 990
Year formed
Eligible to receive tax-deductible contributions (Pub 78)
NTEE code, primary
H00: Medical Research: General
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
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