lupus

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...
“We are on the cusp of a major breakthrough in medical progress, this is not a time to let up, it’s a time to redouble our efforts,” said Joe Biden , 47th Vice President of the United States, in his remarks at Research!America’s 21st Advocacy Awards Dinner on March 15. “We can make sure many more chronic diseases don’t cost you your life, but only if we break down barriers. I see the day a patient is given the right therapy the first time when they are diagnosed. I see the day when prevention is more effective, and where care is personalized and more effective with less side effects.” Former Vice President Biden received the Gordon and Llura Gund Leadership Award for his commitment to...
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...
Dear Research Advocate, Last Friday, while many of us were still savoring a relaxing and enjoyable Thanksgiving, the House released their revamped version of the 21st Century Cures Act. Check out our most recent letter of support and our full statement for more details. Last night, it passed the House by an extraordinary bipartisan majority of 392-26, exceeding even the majority it achieved in its original passage in July 2015. The new Cures package unleashed an avalanche of activity: Mark McClellan, director of the Duke-Margolis Center for Health Policy, former FDA commissioner and Research!America board member, and Ellen Sigal, chair and founder of Friends of Cancer Research, and former...
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...
Hardly anyone knew that 28-year-old Monique Gore-Massy was sick on her wedding day in 2008, but just two months earlier, she had been diagnosed with lupus. Before then, Monique had been coping with symptoms such as fever, chronic body pain, swelling of her joints, hair loss, shortness of breath and mouth sores without understanding why. First she was prescribed antibiotics and then told she was suffering from a viral infection. After nearly a year of confusion and misdiagnosis, Monique was finally diagnosed with lupus. Unfortunately, Monique’s experience is all too common. A recent study found that a majority of people with lupus surveyed (63 percent) reported being incorrectly diagnosed...
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...
Throughout March, patient and research advocacy groups are observing Autoimmune Awareness Month . There are an estimated 23.5 million Americans suffering from one of nearly 100 autoimmune diseases. Some autoimmune diseases are rare but more common autoimmune disorders include Type 1 diabetes, Crohn’€™s disease and lupus. Autoimmune disease results from the body’€™s natural defense system attacking healthy cells. The target of this attack can be a specific organ, such as insulin-producing cells in the pancreas in Type 1 diabetes, or it can be more widespread throughout the body, as is the case for patients living with lupus or rheumatoid arthritis. Autoimmune patients take medication to not...

Sidebar Quote

Luck shouldn't play a role in why I'm alive.
Laurie MacCaskill, a seven-year pancreatic cancer survivor