Highlights from Scientific Conference for the Non-scientist: Advancing Lupus Care Through Research and Advocacy

The Progress and The Promise

Margaret DowdWhat are some of the most exciting new scientific studies that bring hope for better treatments and a cure for lupus?  Over 100 patients, friends and family members gathered October 20 to hear from four scientists and two advocates who are making great progress and fulfilling the promise of cutting-edge research to improve the lives of people with lupus.

Introducing the program, Lupus Research Institute (LRI) President and CEO Margaret Dowd addressed the patients directly. “You are the center of everything we do. We do patient-centric research which means that everything is about you and for you.”

Kenneth FarberKenneth Farber, President of conference co-sponsor Alliance for Lupus Research (ALR) said, “We believe fervently to find a way to prevent and cure lupus is to fund great biomedical research. For that to succeed, we need time, talent and treasure.”

Watch the full video presentations here.

The Latest LRI|ALR Funded Research

Michele KosiewiczMichele Kosiewicz, PhD – Why are Men Protected From Lupus and How Can that Lead to New Treatment Options?

The Bottom Line
Instead of asking why women are 9 times more likely to have lupus, Dr. Michele Kosiewicz turned the question upside down to look at why men are at so much less risk. She and her team at University of Louisville School of Medicine are testing if bacteria in the gut (microbiota) that interacts with male sex hormones (androgens) produce substances that protect against lupus.  “We hope the current research will lead to the development of novel therapies for lupus and other autoimmune diseases that make use of the products of microbiota.”

Michael SteinMichael Stein, MB ChB – Can Reducing Dietary Salt Alleviate Lupus Symptoms?

The Bottom Line
Dr. Michael Stein’s team at Vanderbilt University School of Medicine has developed an innovative way to use MRI imaging technology to measure salt levels in body tissues, such as skin and muscle. “With this technology, they are examining for the first time if lupus patients have excess salt in their tissues and if reducing dietary salt can reduce inflammation and high blood pressure in lupus.”

Martin KriegelMartin Kriegel, MD, PhD – Can Controlling Gut Bacteria Prevent Dangerous Clotting Disorder

The Bottom Line
Do certain bacteria that live in the gut trigger the antibodies that cause dangerous blood clots in antiphospholipid syndrome (APS)? Dr. Martin Kriegel’s team at Yale University School of Medicine is exploring this entirely novel theory and if it is possible to control these bacteria with a form of antibiotics or other interventions like diet modifications to protect from APS. “My goal is to find out which bacteria drive lupus and find new ways to target them.”

Amrie GrammerAmrie Grammer, PhD - Repurposing Existing Drugs for Lupus: An Update

The Bottom Line
How can we get new treatments to lupus patients faster? To address the slow pace of development of new therapies for lupus, this joint ALR-LRI project is exploring whether drugs already approved by the U.S. Food and Drug Administration for other diseases might be used to treat lupus. Conducted by Drs. Amrie Grammer and Peter Lipsky, the goal is to bring better and safer drugs and therapies to lupus patients.

Advocacy

Brenda BlackmonKelly Fund for Lupus founder and television newscaster Brenda Blackmon moderated the conference and shared a bit of her own story as a mom loving a child with lupus. “As tough as it is to be someone with lupus, it is also tough to be someone who loves someone with lupus.”

“Every dime raised by the sale of my book A Mom’s Story goes to ALR and LRI to support advocacy, education and research. Because that’s what will give us all hope and a cure.”

Kathleen Arntsen A lupus patient and 150% committed advocate Kathleen Arntsen stressed that advocacy begins with being a self-advocate. She advises being an active member of your treatment team. Learning about research and connecting with a lupus community, talking to other people who are walking the walk with you.”  She suggests considering being an advocate, to be informed and write a letter, or meet with your legislators. “It gives you so much power to feel you have a voice and can make a difference.”

Thanks go to these generous sponsors for making this educational conference possible: