By Barbara Schillo, Ph.D., Board Chair
May is Lupus Awareness Month when we come together, with focused efforts here in Minnesota and across the country, to educate our friends, families and communities about lupus. Raising awareness is key to securing the research dollars needed to move us toward a cure. We know that a greater awareness of lupus and its effects will lead to earlier diagnoses, better treatment and improved quality of life for those living with lupus.
Research shows that two-thirds of the public knows little or nothing about lupus – clearly, we have work to do.
As we begin Lupus Awareness Month, we reflect on some important advances.
Patient Voices Being Heard
A landmark report, “Lupus Patient Voices,” was released this past March. Findings were based on completed surveys from over 2,100 people living with lupus and 300 people with lupus and their representatives who attended the Lupus Patient-Focused Drug Development Meeting, in Hyattsville, Maryland, in September 2017. An additional 300 people with lupus participated via a live webcast. This report includes data and personal accounts from people with lupus on symptoms, impacts, current treatments, and views on clinical trials. The report has been shared with the Food and Drug Administration to advance treatments for lupus and is an important step in bringing the patient voice into the drug development process.
A multi-center initiative recently launched the first lupus prevention study. The clinical trial will seek to identify individuals at high risk for developing lupus and treat them with an immune-modifying medication before they transition into the disease. The goal is to delay the onset of lupus, lessen its symptoms and potentially prevent it altogether.
We are Making a Difference in Minnesota
Lupus Link Minnesota awarded two research grants in January 2018 to Dr. Hu Zeng at the Mayo Clinic and Dr. Daniel Mueller at the University of Minnesota. These research projects demonstrate that ground-breaking lupus research is being tackled at Minnesota institutions. We believe these grants will advance the search for novel treatments for lupus and help Minnesota scientists leverage additional research funding.
Lupus Link Minnesota continues to provide undergraduates who are interested in basic or clinical research an opportunity to work with an established faculty researcher through its Student Summer Fellowship Program. (See the article in this newsletter announcing this year’s fellows.) These fellowships provide a chance to help young professionals develop hands-on experience with lupus research, in hopes of inspiring the next generation of lupus investigators.
We are also working to be a trusted source of information, and the article by Dr. Emily Gillespie on the current state of lupus drug development and clinical trials provides some timely updates.
While these are significant advancements, there is still much to do to improve the care and quality of life for people living with the disease. Please join our efforts to be a leading voice in Minnesota for all those living with lupus.