May is Lupus Awareness Month; Nationwide Efforts Underway to Solve the ‘Cruel Mystery’.
2012: A Year of Achievement in Lupus Research, Awareness and Support
Achievements Highlight the Lupus Foundation of America’s Leadership Role in the Fight to End Lupus
The year 2012 was a groundbreaking one in the fight to end lupus, as initiatives of the Lupus Foundation of America generated increased public attention for lupus and expanded resources to fund lupus research, education and support services. In 2012, studies supported by the Foundation’s National Research Program released data that hold promise to improve diagnosis of lupus, accelerate development of new treatments, and expand our understanding of the underlying causes of lupus and ways to prevent its devastating impact. The Foundation also worked with lupus champions in the U.S. House of Representatives to establish the first-ever Congressional Lupus Caucus to educate Members of Congress on the need for federal funding of lupus research and education programs. Below is a list of the Foundation’s “2012 Top Ten Achievements in Lupus Research, Education, and Advocacy.”
1. New Rallying Cry Engages Public to Join the Fight to End Lupus
The Lupus Foundation of America began to tackle low awareness of lupus head-on by launching a nationwide campaign to show lupus for what it really is – the cruel mystery. The campaign, with its rallying cry, Help Us Solve the Cruel Mystery™, aims to energize the public and ultimately Congress to devote serious resources to its cure. The Foundation’s new logo features a strikingly positioned question mark in place of the letter ‘P’ in the word lupus to underscore that the disease is a cruel mystery. The Foundation also launched a multi-city education and awareness tour, featuring a 45-foot bus with interactive exhibits that enable visitors to experience what it is like to live with lupus. Each tour stop includes an education program where people with lupus and their families can learn from and interact with world-renowned lupus experts, and a continuing medical education (CME) program on lupus for healthcare providers.
2. U.S. House of Representatives Establishes Congressional Lupus Caucus
With our lupus champions in the U.S. House of Representatives, we stimulated the founding of the first-ever Congressional Lupus Caucus. Caucus leaders will work in collaboration with the Lupus Foundation of America to ensure all Members of Congress truly understand the impact of lupus on individuals and their families, and support initiatives to advance lupus research and improve awareness of the disease among the public and health professionals. In 2012, 57 Representatives joined the bipartisan Caucus.
3. New Lupus Test Improves Diagnosis Accuracy
Exagen Diagnostics, Inc. launched a new test to help physicians make a faster and more accurate diagnosis of lupus. The new test will help rule in lupus and rule out other rheumatic diseases. Research supported by the Lupus Foundation of America was instrumental in the development of this new technology. Early diagnosis of lupus is critical in avoiding major organ damage. The new test will help physicians to better manage the disease and potentially prevent life-threatening complications of lupus.
4. Lupus Insight Prize Expands Foundation’s Initiatives to Advance Lupus Research
The Lupus Foundation of America spearheaded collaborative efforts with other organizations to launch a first-of-a-kind initiative to encourage scientific advances in lupus research. The Lupus Insight Prize will be awarded annually to recognize and honor an outstanding investigator with a documented record of creativity, innovation, and productivity, and with a high likelihood of generating further advances in the diagnosis and treatment of lupus. The Lupus Insight Prize recipient will be awarded $200,000 to be used for research dedicated to advancing understanding of the genetic, environmental, molecular, immunologic or cellular aspects of lupus and/or its treatment.
5. World’s Largest Lupus Walk Raises Funds for Research and Education
The Lupus Foundation of America’s event Walk to End Lupus Now® (formerly known as Walk for Lupus Now) is the world’s largest lupus walk, with nearly 67,000 participants during 2012 in more than 60 cities, and still growing. Walkers and their sponsors this past year contributed more than $5 million to support lupus research studies, education programs, awareness campaigns, support services, and advocacy initiatives. Additional walk sites are planned for 2013 as the annual event brings greater support for programs that help find a cure for the disease and bring greater attention to and support for the needs of people affected by lupus.
6. Revised Classification Criteria for Lupus
The Systemic Lupus International Collaborating Clinics (SLICC) group revised and validated the classification criteria for systemic lupus. The new SLICC Criteria is more sensitive to identifying true cases of lupus, which will help achieve earlier diagnosis of the disease and improve the outcome of clinical trials of potential new treatments for lupus. The Lupus Foundation of America supported the early work to update the existing classification criteria, which has been in use since 1982.
7. LFA-CDAI Initiative Helping Improve Future Trials of Potential New Lupus Treatments
The Lupus Foundation of America Collective Data Analysis Initiative (LFA-CDAI) continued to gather and review data obtained from past trials of lupus investigational drugs. The LFA-CDAI is a groundbreaking initiative in which pooled data from completed trials of potential new treatments for lupus is being analyzed to answer important questions about future trial design. Initial findings were presented last year during the American College of Rheumatology Annual Scientific Meeting. Further analyses will be performed to evaluate the effects of steroid dosing and patient demographics on response rates. The LFA-CDAI is an important part of the Foundation’s mission to improve the quality of life for people with lupus by supporting the development of new, safe, and more tolerable lupus treatments.
8. Annual Awareness Observances Bring Greater Attention to Lupus
The May 2012 observance of Lupus Awareness Month and World Lupus Day on May 10 greatly raised visibility for lupus. Major landmarks, buildings, and fountains were illuminated in purple as part of the Foundation’s Put On Purple initiative to call attention to lupus, including Philadelphia’s Benjamin Franklin Bridge and the iconic Love Park Fountain, Charlotte’s Duke Energy Building, Cleveland’s Terminal Tower, and Washington DC’s prestigious Mellon Auditorium, among many other prominent locations. Celebrities, including Nick Cannon, Steve Harvey, Julian Lennon, Maurissa Tancharoen, Abby Wambach, Shannon Boxx, and Eduardo Xol, posted information about lupus on their social media channels, reaching millions of fans. The Foundation’s Web site received record traffic during May and transmitted 1.5 million pages of information about lupus, delivering information to new audiences.
9. LFA-POINT Program Aids Development of New Lupus Treatments
The Lupus Foundation of America Professional Online Instrument Training Program (LFA-POINT) has become the gold standard training site for professionals involved in lupus clinical trials globally. More than 2,900 health professionals in 53 countries conducting or involved with lupus clinical trials are now using the website. The site provides standardized training on instruments commonly used to measure disease activity and response to treatment during clinical trials of potential new treatments for lupus.
10. National Network Responds to Growing Need for Support Services
During 2012, the Lupus Foundation of America’s national network of chapters, offices, support groups, and community representatives provided information and support services through a variety of formats, including live programs, webinars and teleconferences that reached more than 200,000 individuals and health professionals. The Foundation responded to the growing need for education and support services by organizing nearly 300 educational programs, 2,400 support group meetings, 600 health fairs, and answered over 60,000 inquiries about lupus. Our National Health Educator Network helped guide people through the complexities of living with this devastating and potentially life-threatening disease by providing caring support and personalized information in English, Spanish, and Chinese to fit the varying needs of diverse populations.
New Survey Shows Americans Know Little or Nothing About Disease That Affects1.5 Million.