Pharmaceutical and Biotech Support of the Lupus Research Alliance – 2019
The Lupus Research Alliance’s vision is a world free of lupus – by finding ways to prevent, treat and one day cure this disease. We work diligently to forge appropriate relationships with members of the pharmaceutical and biotech industries that share our vision and are working on potential treatments for lupus. We seek opportunities to collaborate with these companies to raise general disease/health and symptom awareness of the various types and manifestations of lupus. Knowing that only one drug has been approved for lupus in the past 60 years, it is important to us at the Lupus Research Alliance to do our part as a research/advocacy-focused nonprofit to help these companies succeed in their research and to keep the needs of the person with lupus at the forefront in the process of developing potential treatments for lupus.
We seek to have a positive impact on the fantastic work that doctors, research scientists, and clinicians at these companies are doing in lupus. We aim to help them better understand the disease itself as they consider how to develop a treatment and share the best research to take forward into lupus drug development. As an advocacy organization, our role also includes providing pharmaceutical companies with a clearer perspective of what people with lupus really live with on a daily basis and how that translates into what kinds of treatments to potentially develop. On the more complex scientific and clinical research issues regarding the best ways to conduct lupus research, we work together to find answers that will lead us collectively towards potential treatments for lupus and one day a cure.
We request that the companies with an interest in lupus financially support the work of the Lupus Research Alliance in these areas and also to actively engage with our organization and the lupus community to learn as much as they can about the latest science in lupus research. We ask companies to help support the Lupus Research Alliance to raise awareness about lupus.
In the interest of transparency, the grants and sponsorships that companies contribute to the Lupus Research Alliance* allow us to provide many of our very specific activities that surround the lupus research effort. The information below gives you a transparent snapshot of the funding we receive from the pharmaceutical and biotech industry and the events, conferences, projects, and activities they support at our request.
See below for a full detailed listing of funding support received in 2019 from pharmaceutical and biotech companies:
SCIENTIFIC CONFERENCES
In 2019, the Lupus Research Alliance held two scientific conferences to promote dialogue and collaboration among investigators and key thought leaders in the field of lupus research.
Total pharmaceutical company funding for Scientific Conferences in 2019: $227,000.
See details below in Scientific Conference section
CORPORATE MEMBERSHIPS
The Lupus Research Alliance’s corporate membership programs are designed to provide opportunities for interaction between pharmaceutical companies, our senior staff, scientific advisors, and the lupus community on current research and advocacy issues in the lupus community.
Total pharmaceutical company funding through Corporate Memberships in 2019: $270,000
See details below in Corporate Membership section
LUPUS AWARENESS/EDUCATION/ADVOCACY
The pharmaceutical industry and other key players work with the Lupus Research Alliance in raising awareness and to assure that accurate information is provided about the disease both to those affected by lupus and the general public. Industry also helps to support our advocacy efforts, which bring the patient voice to our nation’s legislative policy makers and help to increase the amount of urgently needed public funding for lupus research.
Total pharmaceutical company funding for Lupus Awareness/Education/Advocacy in 2019: $462,620
See details below in lupus awareness/education/advocacy section
MULTI-CULTURAL OUTREACH INITIATIVES
The Lupus Research Alliance continues to expand initiatives throughout the country to increase outreach to people in the racial/ethnic groups disproportionately affected by lupus, including African-Americans, Hispanics/Latinos, Asian Americans, and Native Americans.
Total pharmaceutical company funding for Multi-Cultural Outreach Initiatives in 2019: $340,000
See details below in Multi-Cultural Outreach Initiatives section
SPECIAL EVENTS
The Lupus Research Alliance holds special events throughout the year to increase lupus awareness and advocacy while raising funds for its lupus research programs.
Total pharmaceutical company funding for Special Events in 2019: $47,000
See details below in Special Events section
WALK WITH US TO CURE LUPUS
The Walk with Us to Cure Lupus is Lupus Research Alliance’s signature national grassroots fundraising program to raise critical funds for lupus research and increase awareness of the disease.
Total pharmaceutical company funding for Walk with Us to Cure Lupus program in 2019: $164,000
See details below in Walk with us to Cure Lupus section
FUNDING FOR LUPUS INVESTIGATOR GRANTS
For the past several years, Pfizer’s Centers for Therapeutic Innovation (CTI) and Lupus Research Alliance have been co-funding novel translational research projects driven by leading academic medical centers. The number of grants given each year is flexible, with the amount of funding dependent on the size and scope of the project.
Total funding from Pfizer’s Centers for Therapeutic Innovation (CTI) for grants to lupus scientific investigators in 2019: $182,418
In 2019, the Lupus Research Alliance announced a new partnership with Celgene Corporation to provide grants to lupus scientific investigators for bold cutting-edge research projects. The overarching objective of the LRA-Celgene Accelerator Awards is to fund cutting-edge research projects that focus on understanding the underlying mechanisms of disease, addressing lupus heterogeneity, and identifying novel biomarkers.
Total funding from Celgene Corporation to launch the LRA-Celgene Accelerator Awards in 2019: $3,000,000
Thank you to all of the companies who provided funding in 2019
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*The Lupus Research Alliance has an affiliate called Lupus Therapeutics that is charged with innovative clinical research in lupus. Through Lupus Therapeutics’ Lupus Clinical Investigators Network (LuCIN), they provide specific scientific and clinical consulting and clinical trial start up and recruitment services in support of executing selected industry-sponsored clinical trials in lupus. Lupus Therapeutics offers these services to the pharmaceutical and biotech industries on a fee for services/contractual basis.
In 2019 Lupus Therapeutics collected $1,336,292 in gross revenues from its services offered to the industry to help offset the costs of running and operating the Lupus Clinical Investigator Network which is supported by the Lupus Research Alliance.
These fee for service contracts are not included/reflected in this report as they are not charitable contributions, sponsorships or grants.
Lupus Research Alliance’s 2019 Microbiome in Lupus Meeting
(September 19, 2019 in New York City) featured presentations by international experts from a cross-section of varied disciplines to discuss how this burgeoning field could benefit lupus people with lupus. The invitation-only meeting was attended by over 50 world-renowned scientists and members of LRA’s scientific leadership.
The following companies contributed the amounts indicated for partial support of the 2019 Microbiome in Lupus Meeting:
Pfizer’s Centers for Therapeutic Innovation (CTI) $15,000
GSK $15,000
Janssen Research & Development, LLC $15,000
Lupus Research Alliance’s Annual “Forum for Discovery” Conference
(October 20, 21 & 22, 2019 in New York City) gathered over 100 scientific researchers from academic medical institutions across the country and the world to share their results and exchange ideas in the field of autoimmunity and lupus research.
The following companies contributed the amounts indicated for partial support of the 2019 Forum for Discovery::
AbbVie $15,000
Biogen $15,000
Celgene Corporation $10,000
Pfizer’s Centers for Therapeutic Innovation (CTI) $10,000
Eli Lilly and Company $15,000
EMD Serono $25,000
Equillium, Inc. $15,000
GSK $38,500
Janssen Research & Development, LLC $38,500
Membership in the Lupus Research Alliance’s Corporate Leadership Circle (CLC) provides an opportunity for companies to provide partial support for and receive regular updates on our current lupus research and advocacy programs, as well as offer input about the needs of industry in cases where we can work together to accelerate the progress of new treatments becoming available to people with lupus.
The following companies were members of the Lupus Research Alliance’s Corporate Leadership Circle through a contribution of $22,500 in 2019 (same for all companies):
Aurinia Pharmaceuticals Inc.
Bristol Myers Squibb
Celgene Corporation
Eli Lilly and Company
EMD Serono
GSK
Janssen Research & Development, LLC
Mallinckrodt Pharmaceuticals
Membership in the Lupus Industry Council (LIC) provides an opportunity for companies to work collaboratively in a pre-competitive space to address common impediments and accelerate shared research goals related to the development of new and effective therapies for people with lupus.
The following companies were members of the Lupus Research Alliance’s Lupus Industry Council in 2019 through a contribution of $7,500 (same for all companies):
Aurinia Pharmaceuticals Inc.
Biogen
Boehringer Ingelheim
Bristol Myers Squibb
Celgene Corporation
Eli Lilly and Company
EMD Serono
Equillium, Inc.
GSK
Idorsia Pharmaceuticals Ltd.
Janssen Research & Development, LLC
Mallinckrodt Pharmaceuticals
2019 Lupus Research Alliance National Lupus Advocacy Meeting and Hill Day
(March 18 & 19, 2019) brought together advocates and staff representing 19 states to participate in our annual leadership training meeting for local and state lupus patient advocates, preparing them to meet with their legislators about relevant lupus issues on “the hill”.
The following companies contributed the amounts indicated for partial support of the Lupus Research Alliance 2019 National Lupus Advocacy Meeting and Hill Day:
Eli Lilly and Company $15,000
GSK $35,000
Mallinckrodt Pharmaceuticals $15,000
2019 Advancing Lupus Care Through Research and Advocacy Series — Updates / Conferences in Two Cities (New York City – July 19, San Diego – December 4)
Lupus Research Alliance held events in two cities (see above) to provide people with lupus, advocates, and other community stakeholders the most current information available on lupus research.
The following companies contributed the amounts indicated for partial support of the Lupus Research Alliance 2019 Advancing Lupus Care Through Research and Advocacy Series:
GSK $20,000
Mallinckrodt Pharmaceuticals $20,000
Patient Advocates for Lupus Studies (PALS)
Patient Advocates for Lupus Studies (PALS) is a peer-to-peer patient communication and education initiative being developed in collaboration with the Lupus Research Alliance-sponsored Lupus Clinical Investigators’ Network (LuCIN).
The main goal of PALS is to increase awareness among people with lupus regarding the importance of clinical trials to develop new treatments; and ultimately, to help increase participation in lupus clinical trials especially in minority communities most affected by the disease.
The following companies contributed the amounts indicated for partial support of the Patient Advocates for Lupus Studies (PALS) program in 2019:
Genentech $35,000
GSK $65,000
Other Lupus Awareness Activities (Lupus Awareness Month media campaigns, lupus advocate speaker expenses, Video series, etc.)
The following companies contributed the amounts below for partial support of other Lupus Awareness Activities in 2019:
GSK $50,000
Lupus Nephritis Awareness – Partnership with National Kidney Foundation
2019 NATIONAL KIDNEY FOUNDATION (NKF) Collaborative Projects
Aurinia Pharmaceuticals Inc. $35,000
GSK $109,250
Janssen Research & Development, LLC $50,000
Consultation/Review of Patient Materials (People with Lupus and LRA Key Staff)
Equillium, Inc. $13,370
Lupus Multi-Cultural Engagement Initiatives (MCOTF)
The focus of LRA’s Lupus Multi-Cultural Engagement Initiatives, designed and implemented through our partnership with the National Minority Quality Forum, is to increase outreach to people in the racial/ethnic groups disproportionately affected by lupus, including African-Americans, Latinx, Asian Americans, and Native Americans — with the ultimate goal of increasing minority participation in lupus clinical trials.
The following companies contributed the amounts indicated for partial support of Lupus Index in 2019:
Celgene Corporation $10,000
GSK $40,000
Genentech $40,000
LUPUS INDEX
In 2019, the Lupus Research Alliance continued developing the Lupus Index, a cloud-based data warehouse being created through a collaboration between the Lupus Research Alliance, its affiliate Lupus Therapeutics and the National Minority Quality Forum.
The following companies contributed the amounts indicated for partial support of Lupus Index in 2019:
Aurinia Pharmaceuticals Inc. $50,000
Eli Lilly and Company $75,000
EMD Serono $50,000
Genentech $75,000
The following companies contributed the amounts indicated for partial support of Lupus Research Alliance’s special events in 2019 (Annual Gala, Golf Outing, Luncheon, etc.):
Aurinia Pharmaceuticals Inc. $15,000
GSK $32,000
WALK WITH US TO CURE LUPUS
Walk with Us to Cure Lupus is Lupus Research Alliance’s signature national fundraising and awareness program, with close to a dozen locations from coast to coast. To date, the Walk with Us to Cure Lupus program has raised over $36 million for lupus research. Tens of thousands of volunteers help plan and participate in order to increase awareness of lupus and raise vital funds for lupus research.
The following companies contributed the amounts indicated for partial support of Lupus Research Alliance’s Walk with Us to Cure Lupus in 2019 (with sponsored events in Boston, Chicago, Dallas, Los Angeles, New Jersey, New York City, San Diego, South Florida, Washington, DC, and Wichita):
Aurinia Pharmaceuticals Inc. $10,000
Corbus Pharmaceuticals $1,500
Equillium, Inc. $2,500
GSK $50,000
Johnson & Johnson $100,000
