For anyone impacted by lupus, what motivates all of us to get out of bed each day at the Lupus and Allied Diseases Association is our belief that research will eventually improve our lives.

 

Because of this, we are diligent in our efforts to:

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• Ensure that the patient perspective is included and recognized as an equal stakeholder in the healthcare, public policy and regulatory arenas, and across the research continuum.

• Engage with other stakeholders and organizations to prioritize and accelerate lupus research and drug development such as academia, non-profit research, patient and provider organizations, individuals with lupus and their loved ones, the biopharmaceutical industry, and federal and state public officials.

• Collaborate with patient and care partner experts to share their viewpoints with other stakeholders on clinical trial methodology such as trial design, PROs, informed consent, endpoints, benefits vs. risks assessments, decentralization, recruitment, patient education materials, and treatment value.

• Support lupus and autoimmune research that will identify causes, advance better diagnostics, and lead to the discovery of superior treatments and ultimately, cures.

 

Once again, LADA has expanded our research investments from the previous year.

 

We were honored to present Robert Hewson DPM and the Masonic Medical Research Institute (MMRI) Team with a check in the amount of $200,000 at the Annual Lupus Charity Golf Classic Dinner to continue to support Dr. Samantha Le Sommer’s and Dr. Maria Kontaridis’ Gain-of-function mutations in SHP2 enhance inflammatory macrophage (Mφ) activation in SLE, Dr. Jason McCarthy’s Targeted delivery of bifunctional immunosuppressive agents to the renal endothelium for the prevention of nephritis in SLE, and Dr. Chase Kessinger's Monocyte and neutrophil activation during initiation and resolution of venous thromboembolism in female murine systemic lupus erythematosus. In addition, we funded Dr. Jianxun Wang's The identification of Novel Genes Involved in Development of Lupus Nephritis project. We are honored to share that in May, we partnered with the MMRI to co-sponsor the 1st Lupus Walk in the area at the MMRI Campus and hold a press conference for Lupus Awareness Month. We are thrilled to share with you that this brings our total research support amount to $615,000.00 to MMRI so far.

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We presented Lupus Research Alliance (LRA) Representatives Al Roy, Dorey Neilinger, Jonathan Marks, and Ian Kirkman with a check for $150,000 to continue supporting Dr. Eric Gale’s Noninvasive Imaging of Lupus Nephritis Disease Activity at Massachusetts General Hospital and Dr. Maximilian F. Konig’s Targeting Autoreactive B Cells to Prevent Thrombosis and Fetal Loss in SLE at Johns Hopkins University School of Medicine. This brings our total research support amount to $1,281,050.00 to the LRA since its’ inception.

 

In July, we donated $106,799 to continue to support promising Pediatric Research at the Childhood Arthritis and Rheumatology Research Alliance for Deriving Research Priorities in Neuropsychiatric Systemic Lupus Erythematosus in Children and Advancing Molecular profiling through Translational study of cSLE , and Enhancing understanding and care for youth with cSLE experiencing Adverse Childhood Events. We have now supported $283,576 in research funding to CARRA since 2022.

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Three years ago, we established the Marc R. Chevrier, MD, PhD, FACR, Lupus Research Memorial Fund at the Rheumatology Research Foundation (RRF) to honor the life and legacy of Dr. Chevrier, a pioneer and patient advocate in the field of lupus and a beloved friend of all of us here at LADA. The fund supports lupus research supported within the Foundation’s preceptorships program. I am thrilled to share that we donated another $25,600 this year bringing the total fund to $134,905. We also donated a $30,000 Innovative Research Grant at the RRF for groundbreaking lupus research.

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In July, we donated $50,000 to the Lupus Foundation of America, Inc. to the Michael Jon Barlin Childhood Pediatric Research Program bringing our total support to the LFA to $598,569.for Dr. Joyce Chang’s Functional Properties of the Prefrontal Cortex and Cognitive Dysfunction in Childhood Lupus at the Boston Children’s Hospital, Dr. Linda Hiraki’s Investigating the Genetics of Anxiety and Depression in Children and Adolescents with Systemic Lupus Erythematosus at The Hospital for Sick Children, Dr. Cuoghi Edens’ What About When I Grow Up? The Fertility Goals and Concerns of Teens and Young Adults with Childhood-Onset Systemic Lupus Erythematosus (cSLE) at the University of Chicago, and Dr. Ram Raj Singh’s Proteogenomic Profiling of Kidney Biopsies from Children with Lupus Nephritis Using Spatial-CITE-seq at the University of California, Los Angeles bringing our total support to the LFA to $598,569.

 

LADA donated $561,799 overall this year, which is a new record of research funding for us, bringing our overall total to $2,915,228 since 1990. Our ability to fund this level of lupus research is partially due to the monies raised from the golf event over the years. We thank all supporters for being part of our research investment journey!

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These are unparalleled times for all of us in the lupus community, especially for those of us who have waited decades for more effective treatments that do not destroy the immune system. There are currently over 100 drugs in the pipeline for treating systemic lupus erythematosus and lupus nephritis right now. As people with lupus ourselves, we are working closely with many academic centers, biopharmaceutical companies and other non-profit entities to ensure that our unique patient and care partner perspectives are being included in lupus research and development and on access to care and treatment issues.

 

All of us at LADA believe that it is imperative that all individuals with lupus and allied diseases are given the chance for a better quality of life and the opportunity to pursue their goals and live out their dreams. Our supporters have helped us all to move closer to that objective. After all, Lupus ends with Us. 

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