EIN 58-2492929

Lupus Research Alliance (ALR)

IRS 501(c) type
501(c)(3)
Num. employees
49
Year formed
1999
Most recent tax filings
2020-12-01
Description
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
Total revenues
$44,790,052
2020
Total expenses
$34,266,813
2020
Total assets
$103,408,141
2020
Num. employees
49
2020

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 (bod) 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 $218 million to fund Lupus Research projects. In 2020 alone, over $14 million 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: 1) a new investigator initiated clinical trial award was made in 2020 for $1.6million over three years to study the effects of the covid-19 vaccines on Lupus patients. An additional $1.4 million was funded by Lupus therapeutics to the Lupus clinical investigators network participating in this study;2) 5 Lupus mechanisms and targets award grants (formerly known as target identification in Lupus) were made for a total of nearly $3 million over three years focusing of understanding disease mechanisms and identifying new drug targets; 3) 7 Lupus innovation award grants (formerly known as novel Research program) were awarded for a total of $2.1 million over two year focusing on early-stage fundamental Research into disease mechanisms; 4) 2 distinguished innovator award grants focus on uncovering the underlying causes of Lupus were funded for a total of $2 million over two years;5) 6 common mechanisms grants were awarded jointly with jdrf for over $1.2 million for one- and two-year grants;6) 10 accelerator awards were funded for a total of nearly $3 million with support from celgene (now bristol myers squibb). 7) the Lupus insight prize was awarded for $100,000. This award recognizes a leading researcher who has made a major contribution to the field.the Lupus Research Alliance'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 Lupus Research Alliance aim to translate results from the Research bench to the bedside as quickly as possible. Because the Lupus Research Alliance board of directors funds the administrative and fundraising expenses, 100% of all other contributions goes to support the Lupus Research Alliance'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). 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 over the past ten years in the peer reviewed medical program. Most recently, Lupus Research Alliance advocacy succeeded in the establishment in 2017 of the Lupus Research program under the cdmrp. Over the program's first three years, $5 million was earmarked each year specifically for Lupus; through the Lupus Research Alliance's continued efforts this amount was increased to $10m in fiscal years (fy) 2020 and 2021 defense appropriations bills over five years, $35m was secured under this program, and the lra has requested an increase to $15m for fy 2022.in 2017, the Lupus patient-focused drug development (pfdd) initiative was launched to bring the voice of the patient to drug development. This collaborative effort with the Lupus and allied diseases association (lada) and Lupus foundation of america (lfa) was 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. A report was sent to the fda in spring 2018. The lra continues to work to bring the voice of the patient to the drug review process by responding to relevant calls from the fda for comments. 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 treatment of Lupus. Every year, the lra brings advocates from across the country to Washington dc for a day of advocacy training and pre-scheduled meetings with legislators. The goal is to increase awareness of Lupus and the impact it has on peoples' daily lives to members of congress and to request their support for increased funding for Lupus Research from federal programs such as the nih. In 2020, due to the covid-19 pandemic, we pivoted to a virtual event, encouraging advocates to reach out with phone calls and emails.
Scientific programs:2020 was a year of considerable activity within Lupus Research Alliance's (lra) scientific program even with the pandemic. The implementation of lra's scientific strategic plan focusing on heterogeneity continued with much work done on creating a Lupus bio-repository and registry. In 2020, the Lupus Research Alliance developed a business plan for Lupus nexus, a patient registry and biorepository, to provide a game-changing contribution to Lupus patient-centered Research. The development of Lupus nexus will capitalize on current strategic opportunities in the Lupus field by enabling a collaborative, data-driven platform for the Research community. The Lupus nexus will catalyze global collaborations, Research innovation and precision medicine approaches to accelerate Lupus drug discovery and improve the quality of life of Lupus patients by providing access to patients' samples and data to deliver new treatments, prevent disease progression, and cure lupus.the Lupus Research Alliance encourages cross-sector and cross-discipline partnerships to foster the most innovative and productive Research environment. In 2020, virtual collaborative meetings were held by the Lupus Research Alliance where researchers were encouraged to exchange ideas and help the Lupus Research Alliance target new Research opportunities. This included the: annual forum for discovery where funded scientists and guests share their progress; 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 our advisors review grant application submissions and discuss future overall Research strategy for the organization; Lupus industry council meetings where industry focuses on solving shared obstacles to clinical trials; clinical trials awareness fairs that engage the Lupus community in understanding, participating in and advocating for Lupus clinical trials; and Lupus clinical investigators network (lucin) meetings where top researchers discuss the design and progress for Lupus clinical trials. The Lupus Research Alliance 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 Lupus Research Alliance committed over $8.6 million in 2-year grants in 2020 to top academic centers to foster clinical trial participation in lucin. Lupus therapeutics (lt) continues to have a diverse portfolio of ongoing clinical trials within lucin and in 2020, there were fifteen active studies managed via Lupus therapeutics in conjunction with the lucin network with an emphasis on new treatments for Lupus in phase ii and iii clinical studies. Moreover, lt has a healthy pipeline of new business development discussions with industry related to performing advisory services and/or conducting prospective clinical trials within the network and completed 7 consultative engagements with pharma in 2020.

Grants made by ALR

GranteeGrant descriptionAmount
Oklahoma Medical Research Foundation (OMRF)Lupus Research$1,333,668
Emory UniversityLupus Research$1,182,854
Jackson LaboratoryLupus Research$946,854
...and 40 more grants made totalling $15,398,965

Who funds Lupus Research Alliance (ALR)

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Fidelity Investments Charitable Gift FundFor Grant Recipient's Exempt Purposes$560,100
Robertson FoundationGeneral Operating Support.$250,000
Lupus and Allied Diseases AssociationLupus Research$120,000
...and 67 more grants received totalling $1,686,087

Personnel at ALR

NameTitleCompensation
Kenneth M FarberChief Executive Officer and President$429,099
Debra RoseChief Finance and Administration Officer$205,396
Teodora StaevaChief Scientific Officer$298,364
Albert RoyExecutive Director , Lucin$273,012
Andrea O'NeillExecutive Director$261,568
...and 8 more key personnel

Financials for ALR

RevenuesFYE 12/2020
Total grants, contributions, etc.$41,539,746
Program services$1,291,193
Investment income and dividends$1,594,271
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$344,723
Net income from fundraising events$0
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$20,119
Total revenues$44,790,052

Form 990s for ALR

Fiscal year endingDate received by IRSFormPDF link
2020-122021-09-23990View PDF
2019-122021-03-01990View PDF
2018-122019-10-29990View PDF
2017-122018-11-15990View PDF
2016-122017-11-30990View PDF
...and 7 more Form 990s
Data update history
August 3, 2022
Received grants
Identified 14 new grant, including a grant for $250,000 from Robertson Foundation
August 3, 2022
Posted financials
Added Form 990 for fiscal year 2020
July 22, 2022
Updated personnel
Identified 2 new personnel
July 22, 2022
Used new vendors
Identified 2 new vendors, including , and
December 18, 2021
Updated personnel
Identified 6 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersMedical research organizationsCharities
Issues
HealthDiseases and disorders
Characteristics
Funds one specific organizationPolitical advocacyProvides grantsConducts researchLobbyingFundraising eventsPeer-to-peer fundraisingOperates internationallyNational levelEndowed supportCommunity engagement / volunteeringGala fundraisersFundraising races, competitions, and tournamentsTax deductible donations
General information
Address
275 Madison Ave 10th Floor
New York, NY 10016
Metro area
New York-Newark-Jersey City, NY-NJ-PA
County
New York County, NY
Website URL
lupusresearch.org/ 
Phone
(212) 218-2840
Facebook page
allianceforlupusresearch 
Twitter profile
@alliance4lupus 
IRS details
EIN
58-2492929
Fiscal year end
December
Taxreturn type
Form 990
Year formed
1999
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
H12: Medical Research Fund Raising and Fund Distribution
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
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