Lupus Research Institute Inc

aka L.R.I.   |   New York, NY   |  www.lupusresearchinstitute.org
This organization has not appeared on the IRS Business Master File in a number of months. It may have merged with another organization or ceased operations.
This organization's exempt status was automatically revoked by the IRS for failure to file a Form 990, 990-EZ, 990-N, or 990-PF for 3 consecutive years. Further investigation and due diligence are warranted.

Mission

The Lupus Research Institute (LRI), founded in 2000 by patients, their families and leading scientists in the field, is the world’s leading private supporter of innovative research in lupus. The core of the LRI’s mission is to champion scientific risk-taking in the hunt for solutions to this complex and dangerous autoimmune disease.

Ruling year info

2000

Principal Officer

Ms. Margaret G. Dowd

Main address

330 Seventh Ave Ste 1701

New York, NY 10001 USA

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EIN

06-1565950

NTEE code info

Fund Raising and/or Fund Distribution (H12)

Alliance/Advocacy Organizations (H01)

Specifically Named Diseases Research (H80)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

NOVEL RESEARCH GRANTS

The LRI continues to advance new talent and new approaches to lupus by annually awarding Novel Research Grants of $100,000 per year over a period of three years.

Population(s) Served

Each year, the LRI holds a scientific conference – the only collaborative, integrated forum on lupus – to showcase our progress and breakthrough research. LRI-funded investigators annually report new discoveries and breakthrough results that have implications not only in lupus but also for other complex autoimmune diseases.

Population(s) Served

In 2012, through support from Bloomberg Philanthropies, the Lupus Research Institute invited applications for its first Distinguished Innovator Awards, a global program to provide outstanding scientists with substantial support (up to $250,000 per year for up to four years) to conduct novel research into the fundamental causes of lupus, and lay the groundwork for a potential cure, prevention, and/or highly effective therapy.

Population(s) Served
Population(s) Served

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Goals & Strategy

SOURCE: Self-reported by organization

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Charting impact

Four powerful questions that require reflection about what really matters - results.

Launching the Next Decade in Innovative Research

In 2012, the LRI set aggressive five‐year research goals to continue to encourage creativity and prudent risk‐taking while it simultaneously mounts a major global initiative to transform lupus research.

Major Goals:

1. Launch a major global initiative to harness current knowledge to address the fundamental root causes of lupus and work for a cure

2. Expand the drive for discovery across the full spectrum of disease.

3. Grow the scientific knowledge base to create new understanding of lupus and autoimmunity.

4. Emphasize novel studies in human lupus biology.

“The LRI’s approach effectively advances novel concepts to be furthered by subsequent large-scale funding from the National Institutes of Health (NIH), and to expand the possibilities for new drug development that can help patients.”
-- William Paul, MD, chair of the LRI Scientific Advisory Board.

With generous support from donors, the LRI’s strategic commitment to scientific innovation has produced unprecedented and tangible results in private sector lupus scientific progress.

The Lupus Research Institute’s distinguished 19 member Board of Directors includes lupus patients and family members, representatives from major state lupus organizations, lay leaders of the lupus community, scientists, and clinicians. The LRI's dedicated staff, which includes our President and CEO, Research Director, and Grants Administrator, are assisted by its volunteer Board of Directors and a 12-member Scientific Advisory Board. In addition, the LRI’s national Novel Research Task Force of 76 medical and scientific professionals with experience in lupus volunteer their time to review novel research grant applications as well as evaluate the progress of current grantees.

The LRI advances collaboration and strategic partnerships with other scientific and research organizations, annually participating in national and international meetings, conferences, and working groups in order to advance common goals. With close to 40 companies at different stages of developing new lupus treatments and approximately 30 products in clinical trials, the LRI also proactively reaches out to the pharmaceutical industry to build partnerships to advance lupus research and accelerate the development of new treatments. In June 2013, the LRI convened 12 leading pharmaceutical companies and formed the LRI Industry Council, a forum for industry collaboration in a pre-competitive space. The LRI’s advocacy network, the LRI National Patient Coalition, joins forces with local and state lupus organizations to raise awareness and garner support for issues vital to the lupus and research community.

LRI 2012 IMPACT REPORT

OVERVIEW OF RESULTS

--The percentage of grants that were successful in attracting extended funding and/or resulted in published findings has increased from 80 to 84%.

--A comparison of headline metrics reported in the 2010 Impact Review shows that performance overall has been maintained or improved upon.

--From 2001 to 2009 LRI invested $28.1M in 102 grants.
--68 (67%) of the 102 grants have attracted follow-on funding to continue research initiated as part of the LRI grant.
--These grants have leveraged $127.8M in extended funding – a 4.5 fold return on investment.*

--233 original research papers were published (excludes review articles). The average number of citations per paper has increased from 33 to 39, indicating that impact of LRI-research continues to grow.

--36% of investigators in classes 2001-2009 were working in lupus for the first time. 78% of those newcomers have remained in the field.

* To date (2013), the LRI’s Novel Research Grant program has awarded a total of $40 million for 138 novel research studies; and our investigators have gone on to win an additional $131 million from the National Institutes of Health (NIH) and other sources to extend their innovative work.

TRANSLATIONAL AND CLINICAL IMPACT

Human lupus biology:

--36% of all grants funded to date (classes 2001-2011), and 50% of currently funded grants involved human tissue, blood or genetic material

Commercialization:

--8 patents have been registered or approved, 2 patents licensed
--1 spin-out company formed

Progress towards benefit for patients. Of 102 grants (2001-2009):

--90 projects (88%) remain active.
--68 projects currently involve basic/animal model research only.
--18 projects have progressed to early patient studies.
--2 projects have progressed to drug discovery.
--3 projects have progressed to therapeutic clinical trials
--1 project has progressed to clinical practice

FOR RECENT UPDATES ON THE LRI’S RESEARCH PROGRESS, PLEASE SEE:

http://lupusresearchinstitute.org/lupus-research/major-breakthroughs

Financials

Lupus Research Institute Inc
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Operations

The people, governance practices, and partners that make the organization tick.

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Lupus Research Institute Inc

Board of directors
as of 06/04/2016
SOURCE: Self-reported by organization
Board chair

Jack Lavery and Robert Ravitz

Susan Golick

Founder and Vice President, S.L.E. Lupus Foundation

Arthur Selkowitz

Publicis Groupe

Robert S Katz

Rheumatology Associates, Inc.

Jack Lavery

Lavery Consulting Company

Robert J Ravitz

Neuberger Berman LLC

Richard K DeScherer

Bloomberg L.P.

Anita Fricklas

Author, Board Member--Lupus Foundation of Colorado

Jerome A Chazen

Chazen Capital Partners, LLC

Jennie DeScherer

Philanthropist

C.J. Feinberg

Philanthropist

Daniel J Wallace

Cedars-Sinai/David Geffen School of Medicine, UCLA

Stuart S Kassan

Board Member-Lupus Foundation of Colorado

John A Buck

The John Buck Company

Kathleen Buck

Philanthropist

Debbi Cowan

Rockdyne

Roger Cowan

Rockdyne

Hope Hetherington

Philanthropist/Advocate

Nora Johnson

Philanthropist

JoAnn Quinn

Lupus Alliance of America

Margaret G Dowd

Lupus Research Institute