The Lupus Research Alliance is dedicated to finding a cure for lupus. We believe in doing one thing, and doing it well. Founded in 1999, our sole mission is to prevent, treat and cure lupus through medical research. The Alliance applies a strategic business approach to funding research. In 2000 and 2001 we asked scientists to submit proposals to identify targets for new therapies in lupus. These proposals needed to be ideas that would lead to the development of new drugs or biologic agents to treat lupus within two years. And because we want to fund the best research, wherever that may be, we accepted applications from all over the world, and from industry, as well as academia.
The Lupus Research Alliance was created via a merger of the Alliance for Lupus Research and the Lupus Research Institute.
The Lupus Research Alliance is dedicated to finding a cure for lupus. We believe in doing one thing, and doing it well. Founded in 1999, our sole mission is to prevent, treat and cure lupus through medical research. The Alliance applies a strategic business approach to funding research. In 2000 and 2001 we asked scientists to submit proposals to identify targets for new therapies in lupus. These proposals needed to be ideas that would lead to the development of new drugs or biologic agents to treat lupus within two years. And because we want to fund the best research, wherever that may be, we accepted applications from all over the world, and from industry, as well as academia.
The Lupus Research Alliance was created via a merger of the Alliance for Lupus Research and the Lupus Research Institute.
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Charting Impact
What is your organization aiming to accomplish?
The Lupus Research Alliance is driven by one central long-term objective – to improve the lives of people living with the disease, today and in the long term by encouraging and supporting innovative research to develop new strategies to treat, cure and prevent lupus. The organization's leadership and scientific advisors are committed to accomplishing the following overarching goals to achieve this objective: ** SUPPORTING LUPUS RESEARCH: As the world's largest and most comprehensive private supporter of biomedical research in lupus, Lupus Research Alliance will provide support for a solid cornerstone of cutting-edge innovative research to understand lupus and an integrated scope of research from fundamental science to novel concepts, translational and clinical research, and clinical proof of concept for new treatments. ** PARTNERSHIPS TO ADVANCE LUPUS RESEARCH AND DEVELOPMENT: Lupus Research Alliance will develop strategic partnerships with industry, academics, government and patients to accelerate new treatment development, including the launch of clinical trials. ** PARTNERSHIPS TO ADVANCE LUPUS ADVOCACY Lupus Research Alliance will develop strategic partnerships with the healthcare and scientific community, grassroots community leaders, and people with lupus and all those affected (family members, friends, and caregivers) to increase advocacy efforts to benefit the international lupus community by raising awareness, reducing healthcare disparities in underserved communities, and ensuring representation for the voices of people with lupus, and increasing public funding for lupus research from the National Institutes for Health (NIH) and other government agencies.
What are your strategies for making this happen?
STRATEGIES FOR SUPPORTING LUPUS RESEARCH INCLUDE: The LRA's grant portfolio provides opportunities to pursue the most novel ideas as well as to advance proven approaches to improving treatment through the following three funding mechanisms: *Novel Research Grants Program ($300,000, 3 year grants) Early stage support for creative idea-driven, often high risk – high reward projects *Target Identification in Lupus (TIL) Grants Program (up-to-$400,000, 2 year grants) Research funded under the TIL program is based on realizable goals for translation into new therapies. *Dr. William E. Paul Distinguished Innovator Award in Lupus and Autoimmunity This $1 million award challenges exceptional scientists to pursue innovative, hypothesis- or discovery-driven worldwide lupus research projects that aim to uncover the fundamental root causes of lupus. **STRATEGIES FOR PARTNERSHIPS TO ADVANCE LUPUS RESEARCH AND DEVELOPMENT INCLUDE: *Annual Scientific Conference: Forum for Discovery A collaborative, integrated forum on lupus designed to promote dialogue and collaboration among investigators and key thought leaders in the field of lupus research by showcasing the new discoveries and breakthrough results of LRA-funded investigators. *Lupus Industry Council (LIC) - 15 Pharmaceutical/Biotech Corporate Members The mission of the LRA Lupus Industry Council is to bring industry and academia together to work collaboratively to address common impediments and accelerate shared research goals related to the development of new and safer treatments. *Lupus Clinical Investigators Network (LuCIN) Launched by the LRA in October 2016, the Lupus Clinical Investigators Network (LuCIN) is comprised of leading lupus experts at 58 academic research centers throughout North America. LuCIN provides a coordinated framework for clinical trials to test potential new treatments quickly and cost-effectively while upholding the highest scientific standards. ** STRATEGIES FOR PARTNERSHIPS TO ADVANCE LUPUS ADVOCACY INCLUDE: *Annual Advocacy Meeting and Day on the Hill Annual meeting with over 70 lupus patient advocates and staff representing 15 states. Advocates receive training on first day and meet with their representatives “on the Hill" the second day to address meaningful issues that include strengthening biomedical research at the NIH and establishing a new Lupus Research Program in the Congressionally Directed Department of Defense Medical Research Program. *Lupus Patient-Focused Drug Development Initiative (2017) Collaborative effort with two other lupus organizations to bring perspectives from people with lupus, advocates and caregivers to help inform the FDA's decisions and oversight during the lupus drug development and review processes.
What are your organization's capabilities for doing this?
In July 2016, three leaders in lupus research merged, bringing all of their capabilities and experience together to form the new Lupus Research Alliance: *The Alliance for Lupus Research (ALR) was founded in 1999 by Robert Wood Johnson IV, a member of the Johnson & Johnson family, after his daughter was diagnosed with the disease. Over the years, the ALR became the largest private funder of lupus research in the world. *Founded in 1970 by families affected by lupus, led by Morrie Golick on behalf of his daughter Susan Golick, the nonprofit S. L. E. Lupus Foundation was a pioneer in providing direct patient services for lupus patients in New York City, as well as education, public awareness, eliminating health disparities for underserved women in the lupus community, and funding for novel lupus research. *The Lupus Research Institute (LRI), was created by Board members of the S. L. E. Lupus Foundation in 2000, along with patients, their families and leading scientists in the field, with the mission of supporting and encouraging novel research in lupus. The Lupus Research Alliance is now the largest private funder of lupus research, and its 20-member Board is made up of lupus patients and family members, lay advocates for the lupus community, business leaders, and scientists. The organization could not operate without expert advice from its Scientific Advisory Board (SAB) comprised of 13 thought leaders in lupus research who work closely with the 35 staff members, Board, and a score of medical and scientific professionals with experience in lupus to oversee the Lupus Research Alliance's ambitious scientific agenda, including close to 100 expert peer reviewers who evaluate the merits of research grant applications as well as monitor the progress of current grantees throughout their funding period. The Lupus Research Alliance recognizes that collaboration and strategic partnerships with other scientific and research organizations is vital to achieving our goals, annually participating in national and international meetings, conferences, and working groups in order to advance common goals. Tens of thousands of volunteers on the grassroots level assist the LRA with fundraising, advocacy, and raising awareness about lupus and lupus research by participating in its signature Walk with Us to Cure Lupus events scheduled in up to 18 markets across the U. S. each year. In addition to our board, staff, and volunteers, the collaborations we sponsor between patients, the scientific and medical communities, government, the pharmaceutical and biotech industry, and private individuals and foundations, all contribute to new scientific discoveries with the promise of transforming the lives of all affected by lupus – patients, families, loved ones and the entire lupus community.
How will your organization know if you are making progress?
SUPPORTING LUPUS RESEARCH: The LRA's research program is quantitatively evaluated by annually assessing the number of applications received, the number of grants awarded or renewed, and the amount of funding that has been distributed to investigators. The main qualitative evaluation for the program is conducted by the Lupus Research Alliance's Scientific Advisory Board members, who oversee all grantees to assess that work meets the stated aims of their proposals. Approval of annual progress reports is required to maintain continued funding. All studies funded through the LRA's research programs are also assessed through other performance indicators, including reported discoveries/breakthroughs, citations, and achievement of follow-on funding. ** PARTNERSHIPS TO ADVANCE LUPUS RESEARCH AND DEVELOPMENT and LUPUS ADVOCACY: Partnerships are quantitatively assessed by the number of new organizations engaged. Partnerships are also evaluated qualitatively by the outcomes of the collaborative projects that are developed (e. g. , number of investigators who attend the Scientific Conference and present findings, number of people with lupus who participate in patient advocacy, education and awareness events, patient advisory boards, and clinical trials.
What have and haven't you accomplished so far?
Following is a sampling of the Lupus Research Alliance's recent accomplishments: RESEARCH As of 2016, the LRA had funded $172 million in lupus research programs, including the most recent awards of 12 Novel Research Grants, 7 Target Identification in Lupus (TIL) Grants, and 2 Distinguished Innovator Awards (DIAs). Recent breakthroughs reported by Lupus Research Alliance-funded investigators include: *Dr. Stefania Gallucci (Temple University) pinpointed how a particular kind of infection triggers lupus flares. *Dr. Douglas Green (St. Jude Children's Research Hospital) found that lupus may be caused by the body's inability to dispose of dead cells. *Dr. Gregg Silverman (NYU) demonstrated that people with lupus have an imbalance of 'good' and 'bad' bacteria in the gut that could be restored to normal . *Dr. Zhijian'James' Chen (UT Southwestern Medical Center) discovered a specific enzyme that “sounds the alarm" for the immune system to attack. This discovery is expected to help develop new drugs that can stop this process. *Dr. Kenneth Smith (Cambridge) found a way to artificially exhaust certain immune cells, making them too tired to effectively attack the body, thereby lessening disease progression and organ damage. *Dr. RongFan (Yale University) developed a microchip platform to analyze the role of specific T cells in causing inflammation with goal of a treatment to block these cells. **PARTNERSHIPS TO ADVANCE LUPUS RESEARCH AND DEVELOPMENT and ADVOCACY: *Lupus Clinical Investigators Network (LuCIN) The LuCIN network launched its first clinical trial in May 2017: a non-interventional study of a custom smartphone app that enables lupus patients to report symptoms in real time, which can potentially lead to more precise treatment. *Through the consistent efforts of Lupus Research Alliance advocates since 2004, to date nearly $20 million dollars has been awarded to fund 21 important lupus research studies through the federal Department of Defense's Peer Reviewed Medical Research Program. In 2017, LRA advocates supported the Congressional Lupus Caucus with hundreds of visits, letters and emails to pass legislation to establish a dedicated program within the DofD Congressionally Directed Medical Research Program, and the 2017 Congressional budget allocated $5 million to fund the new Lupus Research Program. *Lupus Patient-Focused Drug Development Initiative (2017) Top decision makers at the U. S. Food and Drug Administration (FDA) heard from over 550 people impacted by lupus at an unprecedented in-person meeting and live webcast (Sept. 25, 2017) about what it's really like to live with the disease and what they need most from new treatments. A comprehensive Lupus: Patient Voices report will also be sent to the FDA summarizing the feedback from the meeting, online participation, and surveys from over 2,000 people with lupus. TO FOLLOW THE LUPUS RESEARCH ALLIANCE's PROGRESS, SEE lupusresearch. org
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This impact information is current as of March 2019, when it was provided to us by GuideStar.
At this time, Impact information published on this organization's page has no effect on its rating per our methodology.
Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.
Program Name
Amount Spent
% of Program Expenses
Scientific Programs
$10,990,644
48.5%
Research
$10,896,205
48.1%
Public Policy
$776,350
3.4%
Ratings History Lupus Research Alliance has received 2 consecutive 4-star ratings from Charity Navigator.
Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations).
