Lupus Foundation of America

March has been National Autoimmune Disease Awareness month, a month dedicated to increasing awareness and bringing greater focus to the myriad of immune diseases that affect more than 50 million Americans. At Janssen, we are focused on deepening our understanding of such complex diseases and advancing science to discover and develop innovative therapies for people living with immunologic diseases, while we also work toward a future where we hope to eliminate many of these devastating diseases altogether. I was honored to be part of a panel discussion on March 15th at the Research!America 28th Annual Meeting of Members in Washington, D.C. on the topic of lupus, an immune-mediated disease...
“As you’re advocating for research dollars, make sure you make it personal. Insightful stories, emotional stories, those things work,” said Rep. David McKinley (R-WV-01) during Research!America’s 28th Annual Meeting of Members held at the Willard Intercontinental Hotel in Washington, D.C., on March 15. McKinley, who lost his mother to Alzheimer’s, praised research programs like the National Institutes of Health (NIH) BRAIN initiative. “We know that the NIH supports over 400 thousand jobs across America. Every year NIH writes grants for $32 billion. That’s significant,” McKinley said. “So we’ve actually seen a very positive impact from what the NIH has done. [But] it’s not just creating jobs...
This article is the third in a series highlighting the accomplishments of Research!America’s 2017 Advocacy Award honorees who will be saluted at a dinner in Washington, D.C. on March 15. More details can be found here . “It started off fairly minor with just the classic butterfly rash,” Maurissa Tancharone Whedon explained in a public service announcement for the Lupus Foundation of America. “Over the years as I neared my twenties [lupus] started to attack more major organs. I’ve had a lung flare, central nervous system flare, two kidney flares.” The central nervous flare was the most debilitating for Whedon, who could not see, talk or walk for six months. Whedon is one of an estimated 1.5...
In this new series of videos , we illustrate the urgent need for exploring opportunities to increase scientific understanding of lupus using recommendations from the recently released Action Plan for Lupus Research . The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), part of the National Institutes of Health (NIH), released the action plan to identify and examine opportunities to increase scientific understanding of lupus, which will ultimately lead to safer and more effective treatments and, eventually, cures. Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. It is difficult to diagnose, hard to live...
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), part of the National Institutes of Health (NIH), recently released a new report, the Action Plan for Lupus Research to assess opportunities for increasing scientific understanding of lupus, which will ultimately lead to safer and more effective treatments and, eventually, curative strategies. The report reflects the current need and gap in lupus research for helping to improve upon a basic understanding of the disease and to identify targets for advancing lupus drug development. Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body. It is difficult to diagnose...
The July/August 2015 issue of The Research Advocate is now online . Highlights from this month's issue include: A federal policy update with details on the House passage of the 21st Century Cures Act. An article on the Lupus Foundation of America's awards dinner honoring Research!America's president and CEO, Mary Woolley. A member spotlight featuring the Gates Center for Regenerative Medicine. Details on upcoming events in Washington, DC, such as Research!America's National Health Research Forum, Rally for Medical Research Hill Day and the 2015 Golden Goose Awards Ceremony. Download the entire July August 2015 Research Advocate as a PDF.
By Sara J. Chang, Government Relations and Public Policy Manager, Lupus Foundation of America. ’€œWe are lupus activists, and we’€™re here to tell our stories and make our voices heard throughout Capitol Hill!’€ That was the empowerment felt during the Lupus Foundation of America’€™s biennial National Lupus Advocacy Summit held June 24-25, 2013. It is always an energizing and rewarding event for our lupus activists and 2013 was no exception. We had meetings with 176 Congressional offices, involving 220 people representing 30 states. Our online activists also came out in force, generating 3,503 emails and phone calls to Congress during the two-day event! We took to Capitol Hill to urge...

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Without research, there is no hope.
The Honorable Paul G. Rogers