Congress passed the Consolidated Appropriations Act of 2014. While this funding brings some good news in the fight against lupus, the Act only restores some of the money to the NIH that was previously cut through the automatic spending reductions (sequestration).
2013: Transforming Challenges in Lupus into Progress and Hope
(Washington, DC) 2013 was a very successful year for our efforts to improve the quality of life for all people affected by lupus. Our accomplishments expanded scientific understanding of lupus, provided tools that are helping to develop a full arsenal of new treatments, and met the growing need to provide caring support and guide people through the complexities of living with this misunderstood and unpredictable disease. With assistance from lupus experts, our national network of chapters, our dedicated donors, supporters, lupus activists, celebrities and people with lupus who joined the fight this year, we take great pride in the following accomplishments:
#1 - Scientific initiatives helped bring down barriers to lupus drug development.
We continued to help build an arsenal of new treatments for lupus by implementing recommendations of the Lewin Report, a report we commissioned that was the first to detail obstacles in lupus drug development.
- The Lupus Foundation of America Professional Online Instrument Training Program (LFA-POINT™), our online portal that trains health professionals on instruments used in clinical studies, surpassed a total of 3,500 users from 53 countries. The National Institutes of Health began to use the portal, demonstrating its value to advance lupus clinical research.
#2 - Our new lupus.org website met a growing demand for expert information on lupus.
We continue to be the most trusted source for lupus information on the Internet.
- In 2013, we debuted a powerful redesigned website with a new Q&A format and information grouped to meet specific audience needs.
- Exceeded five million website visits in 2013, and surpassed100,000 likes on Facebook, becoming the largest lupus community on Facebook.
- Generated more than 30-million impressions for lupus information presented to people on Facebook.
#3 - Foundation provided caring support for people affected by lupus.
We work hard to ensure that people with lupus have access to the vital, life-saving medications used to treat lupus, and to provide them with information and resources to improve their quality of life.
- Established the Lupus Foundation of America Caregiver Task Force to help set priorities and provide feedback on programs, resources and services that assist caregivers as they help their loved ones better manage their own health.
- In 2013 alone, we responded to more than 60,000 inquiries from people seeking lupus information and local resources through our national health educator line and our national network of local chapters.
#4 - Our publications expanded knowledge by providing authoritative information on lupus.
We are the trusted source for the latest medically sound information on lupus.
- In 2013, we joined forces with medical publisher BMJ to establish Lupus Science & Medicine™, the first open access peer reviewed medical journal dedicated to lupus.
- Celebrated the tenth anniversary of Lupus Now®, the first national magazine devoted to lupus that reached more than 100,000 individuals with lupus, their families, health professionals and members of the science press.
#5 - “Help Us Solve the Cruel Mystery™ National Tour” let people know what it’s like to live with lupus.
We continued our outreach efforts to increase awareness of lupus and build support for the needs of people affected by the disease.
- Concluded the first round of our “Help Us Solve the Cruel Mystery™ National Tour,” which featured a 45-foot bus with interactive exhibits that show how lupus impacts the daily lives of individuals and families.
- In conjunction with the bus tour, we conducted education programs for thousands of people to hear world-renowned experts present the latest information on ways to live better with lupus.
#6 - New research findings expanded understanding of lupus and helped to improve treatment.
As part of our national research effort, we advocated for expanded public and private investment in lupus research. This year, important advances were made in basic and clinical research that will help doctors better manage lupus.
- Investigators discovered detailed evidence that the signaling process used by cells to communicate with each other was abnormal in lupus.
- Researchers also learned that patients with lupus-related kidney disease need at least four years of treatment after initial improvement to prevent future flares.
- We joined with other lupus organizations to award the first Lupus Insight Prize to Mark J. Shlomchik, MD, PhD, the Chair of Immunology at the University of Pittsburgh. The prize annually honors an outstanding investigator with a documented record of creativity, innovation, and productivity.
#7- Our Walk to End Lupus Now™ events become the world’s largest lupus walk.
Walk to End Lupus Now™ events across the nation generated awareness of lupus and support for people living with the disease, and raised funds for local and national programs to solve the cruel mystery of lupus.
- In 2013, our lupus walks were held in some 60 communities with more than 70,000 participants, making our event the largest lupus walk in the world.
- This year alone, Walk to End Lupus Now events raised more than $5 million for lupus research, education programs and support services.
#8 - Our advocacy outreach efforts gave a strong voice to people with lupus.
We rallied grassroots activists and urged them to tell their stories to educate elected officials and policymakers on issues important to people with lupus.
- We hosted the National Lupus Advocacy Summit that was attended by 250 activists from 31 states, and met with 156 federal legislators to urge increased funding for lupus research and education programs.
#9 - We advocated Congress to provide more funds for lupus research and education.
With the help of the nation’s largest network of lupus activists, we successfully advocated Congress to provide more resources for lupus.
- Secured an additional $3.6 million, for a total of $26.6 million, to support the National Lupus Patient Registry conducted through the Centers for Disease Control and Prevention (CDC), becoming the largest-ever lupus research study.
- Advocated successfully for the continued support of lupus research through the Department of Defense (DoD) Peer Reviewed Medical Research Program, which in 2013 awarded $1.6 million to two biotechnology companies to help develop new treatments for lupus. To date, the DoD has provided $14 million for lupus research, including funds for a study that developed the first diagnostic test that helps physicians determine a diagnosis of lupus.
- Secured an additional $1 million, for a total of $5.5 million, for The Lupus Initiative, which launched in 2013, to train more doctors on recognizing the signs and symptoms of lupus for earlier diagnosis.
#10 - Celebrities joined a growing chorus to raise lupus awareness.
Raising awareness of lupus is a key part of the Foundation’s strategy to build public support for programs to combat lupus and provide services that help those who suffer from its brutal impact.
- Julian Lennon, Whoopi Goldberg, Olympic gold medal soccer player Shannon Boxx, comedians Nick Cannon and Jo Koy, and actors Ian Harding, Tichina Arnold and Maurissa Tancharoen Whedon, among others, rallied their fans and leveraged media coverage to help raise lupus on the national scene.
As 2013 comes to an end, Sandra C. Raymond, President and CEO, reflects on the advances Lupus Foundation of America has made over the years, and speaks about the key priorities for the future.