Lupus Research Alliance, Inc.

The Lupus Research Alliance (LRA) is driven by one central long-term objective – to improve the lives of people living with the disease, today and in the long term. The organization’s leadership and scientific advisors are committed to accomplishing the following overarching goals to achieve this objective:

SCIENTIFIC RESEARCH
*The LRA will encourage and support innovative research to develop new strategies to treat, cure and prevent lupus.
As the world’s largest and most comprehensive private supporter of biomedical research in lupus, the Lupus Research Alliance will continue to 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.

ADVOCACY AND AWARENESS
*The LRA will advocate for people with lupus and strengthen awareness in our society about the need for continued research.
The Lupus Research Alliance will continue to 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, 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.

CLINICAL TRIALS
*The LRA will advance clinical trials.
Because clinical studies are essential for delivering safer and more effective treatments, the Lupus Research Alliance will continue to take a leadership role in driving clinical research, including the encouragement of qualified people to participate in lupus clinical trials.

STRATEGIES FOR SUPPORTING LUPUS RESEARCH INCLUDE:
Investing in Trailblazing Research
Since 1999, the Lupus Research Alliance (LRA) has funded over $200 million in support of innovative lupus research, leading to key discoveries that are improving diagnosis and treatment, while helping researchers find the mechanisms to prevent and cure the disease.
As the world’s largest private funder of lupus research, in 2018 the Lupus Research Alliance funded 15 scientists to conduct promising investigations through three grant mechanisms:

• The Dr. William E. Paul Distinguished Innovator Award in Lupus and Autoimmunity challenged two extraordinary scientists to pursue innovative, hypothesis- or discovery-driven projects with up to $1 million in grants.

• Our Novel Research Grant Program awarded $1.8 million for six high-risk, high-reward, original research projects relevant to basic, translational, and clinical investigations in lupus.

• Seven scientists received $4.2 million in grants through our two-year Target Identification in Lupus (TIL) grant program that aims to promote the discovery molecular pathways and therapeutic targets that will lead to new treatments.

The LRA encourages key scientific collaboration by sponsoring its Annual Scientific Conference - Forum for Discovery and other meetings that bring leading researchers together to discuss the latest findings and help coordinate research activity.

Advocacy and Awareness for the Lupus Community
The LRA advocates on behalf of the lupus community by raising awareness about the vital need for research and clinical trials, the importance of increasing public funding for lupus research from government agencies and ensuring representation for the voices of people with lupus (and their families).

Advancing Clinical Trials
The LRA is the only voluntary lupus health organization to organize and fund a clinical trials network. Administered by the LRA’s affiliate, Lupus Therapeutics, the Lupus Clinical Investigators Network (LuCIN) is a North American-based lupus clinical trials network composed of 57 of the most reputable academic research medical centers in the world. LuCIN brings together the biopharmaceutical industry and lupus experts to evaluate the safety and effectiveness of new therapies for lupus.

The LRA also recently redesigned LupusTrials.org, the only website focused entirely on helping people in the lupus community navigate the world of lupus clinical studies.
The site provides education for the general public to learn about clinical trials, search for trials that may be right for them, and find out about the latest break throughs in lupus clinical research.

In July 2016, three leaders in lupus research merged -- the Alliance for Lupus Research, the Lupus Research Institute, and the S.L.E. Foundation -- bringing all of their capabilities and experience together to form the new Lupus Research Alliance (LRA). With over 20 years of expertise, resources, and collaborative relationships, the LRA is dedicated to achieving its mission: to lead the global drive to deliver new treatments, prevent disease progression and cure lupus.

The LRA’s 21-member Board is made up of lupus patients and family members, lay advocates for the lupus community, business leaders, and scientists. Moreover, the LRA’s Board of Directors underwrites all administrative and fundraising costs, so that 100% of all donations raised goes directly to support innovative lupus research programs.

The LRA operates with expert advice from its Scientific Advisory Board (SAB) comprised of 11 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 and monitor the progress of current grantees.

In 2016, the LRA created the Lupus Clinical Investigators Network (LuCIN), comprised of over 200 clinician-scientists at 57 academic medical centers. The investigators and other specialized personnel within LuCIN are experts at planning and conducting lupus clinical research on new investigational drugs or repurposed drugs (which have already been extensively tested for other diseases and found to be safe).

Supported by the LRA and its affiliate, Lupus Therapeutics, LLC (which functions as the administrative and fiscal entity of LuCIN and manages the LRA’s clinical trial programs), LuCIN scientists work collaboratively to identify potentially transformative treatments and conduct related clinical trials.

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 also assist us with fundraising, advocacy, and raising awareness about lupus and lupus research by participating in our signature Walk with Us to Cure Lupus events, which are scheduled in over a dozen markets across the U.S. every year.

In addition to our Board, staff, and volunteers, the collaborations we sponsor between people with lupus, the academic/scientific communities, government, pharmaceutical/biotech industries, and private individuals and foundations, all contribute to new research discoveries with the promise of transforming the lives of all affected by lupus.

Following is a sampling of the Lupus Research Alliance's recent accomplishments:

SCIENTIFIC RESEARCH
To date, the LRA has funded over $200 million through over 500 grants in support of innovative lupus research, leading to key discoveries that are improving diagnosis and treatment, while helping researchers find the mechanisms to prevent and cure the disease.
Early pivotal research discoveries funded by the LRA that have advanced lupus diagnosis and treatment include:

*Our early exploration of B Cells led to the development of belimumab, the first new lupus drug in over 60 years and the only one developed specifically for lupus.

*Our funding in 2004-2005 to Drs. Mary Crow (Hospital for Special Surgery in NY) and Timothy Behrens (University of Minnesota) first identified the relevance of the Interferon genetic signature in lupus, leading to work by many investigators on therapeutic antibodies targeting the Interferon Pathway that are showing promise in clinical trials.

Recent key discoveries made possible by funding from the LRA include:

*The LRA’s Distinguished Innovator Awardee, Dr. Zhijian‘James’ Chen, UT Southwestern Medical Center, discovered a specific enzyme that “sounds the alarm” for the immune system to attack, a discovery expected to aid in developing new drugs to stop this process.

*Dr. Katherine Fitzgerald, University of Massachusetts Medical School identified specific molecules that regulate the immune system’s response to germs that can speed development of a treatment to turn off this switch.

*The LRA’s Novel Research Grantee, Dr. Marko Radic at University of Tennessee discovered that depleting the number of harmful B cells with a novel immunotherapy that employs modified T cells (called CAR T cells) may offer an effective strategy to treat lupus.

ADVOCACY
Through the consistent efforts of the Lupus Research Alliance’s 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 (DOD)’s Peer Reviewed Medical Research Program. The LRA’s advocacy also helped to establish the DOD’s Lupus Research Program (LRP), with funds specifically allocated for lupus research, with $5 million allocated to fund the LRP in 2017 and again in 2018.

CLINICAL TRIALS
Comprised of leading lupus experts at 57 academic research centers throughout North America, our Lupus Clinical Investigators Network (LuCIN) program (administered by the LRA’s affiliate, Lupus Therapeutics) provides an invaluable framework to test potential new treatments.

Nine clinical trials are currently underway at LuCIN centers with a scope that is wide ranging — from evaluating a new app aiming to help patients report their symptoms more accurately in real time, to testing new and existing drugs as potential treatments for lupus.

FOR MORE DETAILS AND TO FOLLOW THE LUPUS RESEARCH ALLIANCE’s PROGRESS, SEE lupusresearch.org