Frequently Asked Questions about the Lupus Research Alliance
1. What is the Lupus Research Alliance?
The Lupus Research Alliance is a new organization uniting the three nonprofit leaders in lupus
research, the Alliance for Lupus Research, Lupus Research Institute and the S.L.E. Lupus
Foundation, in the quest to free the world of this autoimmune disease through the power of
scientific research.
2. How will the merger benefit lupus patients?
By joining forces as the Lupus Research Alliance, the organization serves as the primary
catalyst setting the agenda to yield new scientific discoveries into prevention, treatment and
cure of the disease. We are determined to shepherd new scientific discoveries into potential
treatments through ongoing partnerships between patients, the scientific and medical
communities, government and the biopharmaceutical industry, that can deliver much-needed
breakthroughs in the genetics, immunology and organ involvement of lupus and
autoimmunity.
3. Why did ALR, LRI and SLE Lupus Foundation decide to merge?
By joining forces as the Lupus Research Alliance, the organization serves as the primary
catalyst setting the agenda to drive new scientific discoveries into prevention, treatment and
cure of the disease. The new organization now spans the full spectrum of innovation in lupus
research across fundamental and translational research to human immunology and clinical
trials -- taking the most promising ideas from inception through implementation to speed new
treatments and diagnostics to patients.
4. What is the mission of the new organization?
The new organization unites three organizations sharing one common goal – to transform the
lives of all affected through the power of science - by pushing the limits of exploration and
shepherding new scientific discoveries to find ways to prevent, treat and cure lupus.
5. How have the legacy organizations contributed to lupus research?
The Lupus Research Alliance is the world’s largest private sector organization dedicated to
advancing lupus research. Collectively, our three organizations have already devoted more
than 75 years to the cause and are responsible for funding over $200 million in lupus research
programs. Combined, we have produced many of the decade’s most pivotal discoveries and
are committed to pushing the limits of exploration by seizing every opportunity to transform
the lives of all affected by this disease – patients, their loved ones and the entire lupus
community.
6. When is the merger going to be effective?
The merger is effective immediately.
7. How is the new organization funded?
Because our Board of Directors covers all our administrative and operating costs, 100% of all
donations go directly to support research programs, helping realize our vision of a world free
from lupus.
8. What are the research objectives of the Lupus Research Alliance?
The new organization now encompasses the full spectrum of innovation in lupus research
across fundamental and translational research to human immunology and clinical trials -taking the most promising ideas from inception through implementation to speed new
treatments and diagnostics to patients.
9. Who will head up the new organization?
As co-CEO’s, Margaret G. Dowd and Kenneth M. Farber will share the responsibility of leading
the new organization.
10. Who will serve on the new Board of Directors?
The Lupus Research Alliance Board of Directors is an exceptional group of people who share
the organization’s vision of a world free from lupus. All have contributed significantly to the
lupus cause for many years and we are grateful for their continued commitment.
Officers:
Robert W. Johnson IV, Chairman of the Board
Richard K. DeScherer, Vice-Chairman of the Board
Kenneth M. Farber, Co-President and Co-Chief Executive Officer
Margaret G. Dowd, Co-President and Co-Chief Executive Officer
Debra Rose, Chief Financial & Administrative Officer
Robert J. Ravitz, Secretary
Joseph Mauriello, Treasurer
Directors:
Ira Akselrad
Neil J. Burmeister
Jerome A. Chazen
Jennie L. DeScherer
Richard K. DeScherer
Sir Marc Feldmann, M.D., Ph.D.
Susan Golick
Robert W. Johnson IV
Daniel M. LaVecchia
Louis Lucido
Joseph Mauriello
William J. Mulvihill
Robert W. Pittman
Robert J. Ravitz
Fern Kaye Tessler
Carol Weisman
Keith C. Wold
William J. Wolfe
11. Who will serve on the new Scientific Advisory Board?
The new Lupus Research Alliance Scientific Advisory Board is comprised of 13 thought leaders
in lupus research. All have served as advisors to one of the legacy organizations. The Scientific
Advisory Board is co-chaired by Mary Crow, M.D.,
Physician-in-Chief and Chair of the Department of Medicine at Hospital for Special Surgery and
is Chief of the Division of Rheumatology at HSS and NewYork-Presbyterian/Weill Cornell
Medical Center and Gerald Nepom, M.D., Ph.D., Director of the Benaroya Research Institute at
Virginia Mason as well as Director of the Immune Tolerance Network (ITN), sponsored by the
National Institute of Allergy and Infectious Diseases.
First
Name
Last
Name
Degree
Institution
Mary K.
Crow
M.D.
Mary
Anthony
J.
Collins
Ph.D.
Hospital for Special Surgery
Past CSO, Inflammation and Immunology
Pfizer Research
Coyle
Pfizer Inc.
Mike
McCune
Ph.D
M.D.
Ph.D
Kenneth
Kalunian
M.D.
Brian
Kotzin
Gerald T.
Nepom
MD
M.D.
Ph.D
University of California, San Diego
Past VP, Medical Sciences & Global Clinical Dev
Amgen
Virginia
Pascual
David S.
Pisetsky
Jane
Benjamin
D.
Salmon
Mark J.
George
University of California, San Francisco
Benaroya Research Institute at Virginia Mason (BRI)
M.D.
M.D.
Ph.D
Baylor Institute for Immunology Research
Hospital for Special Surgery
Shlomchik
M.D.
M.D.
Ph.D
M.D.
Ph.D
Tsokos
M.D.
Beth Israel Deaconess Medical Center
Schwartz
Duke University Medical Center
Washington University
University of Pennsylvania Medical School
12. What is the role of the founders of the three organizations?
This merger unites the lupus community with founding members Susan Golick and Robert W.
Johnson IV serving on the new Board of Directors alongside many additional leaders who have
been outstanding supporters of the three organizations for many years.
13. Where can I find information about the new Lupus Research Alliance?
Our new website is currently under construction. Meanwhile, for news about the Lupus
Research Alliance and information about the three legacy organizations comprising it, please
visit:
o www.lupusresearch.org
o www.lupusresearchinstitute.org
o www.lupusny.org
14. How can I get involved with the new organization?
The Lupus Research Alliance welcomes participation by patients, family and friends. You can,
participate in our Walk with Us to Cure Lupus program, join our Young Leaders group, attend
events, help with fundraising, etc. Email: [email protected] to learn how you can get
involved in advancing the lupus cause.
15. What is the Young Leaders group?
The Young Leaders group is a diverse group of professionals who are committed to the
organization’s mission. They bring their creativity and experience to further the organization’s
outreach through social events, awareness, programming, and fundraising. Email Julia
Perdigao at [email protected] to stay informed about Young Leaders’ activities.
16. What is Walk with Us to Cure Lupus?
Walk with Us to Cure Lupus (Walk) began in 2002 with its first Walk in Washington, DC. Today,
tens of thousands of volunteers from across the country have joined the quest to find a cure
for lupus through this program. Friends, families and co-workers share their stories and their
spirit, while raising funds for lupus research. 100% of all the money raised through the Walk
program goes directly to support lupus research programs, because the Board of Directors
funds all administrative and fundraising costs.
17. Where will the new organization be physically located?
The Lupus Research Alliance national office is based in New York City.