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Lupus and Foundation Key Messages

Lupus Foundation of America Mission

Our mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy. 

"The Basic" Elevator Pitch
  1. The Lupus Foundation of America is devoted to improving quality of life for people with lupus through research, education and advocacy. 
  2. Our research has contributed to every major breakthrough in lupus research in the past 40 years. 
  3. We have redefined lupus research beyond just awarding grants and are tackling lupus from every direction to identify the causes of lupus, discover better ways to control symptoms and, ultimately, find cures for lupus.  
  4. And we do this while providing caring support for people affected by this devastating disease and leading advocacy efforts to bring more funding for research and services.
"Our Essence" - Research Elevator Pitch
  1. We have redefined lupus research to expand efforts beyond merely funding research grants; this fight requires visionary leadership. Our approach addresses the root problems that interfere with progress and sets a course to solve them. 
  2. Our focus is on three critical goals: identify the causes of lupus, discover better ways to control symptoms and find pathways to cure lupus.
  3. Our advocacy efforts generate hundreds of millions of dollars in government funding for lupus research, overcome regulatory hurdles, and incorporate patient perspectives into the drug development and approval process so more and better treatments can get into the hands of people with lupus. 
     
"Our Research" Expanded Research Elevator Pitch
  1. The Lupus Foundation of America established the first national research program for lupus. 
  2. The studies we funded have contributed to every major breakthrough in lupus research during the past 40 years.
  3. However, the exact causes of lupus remain elusive. It is difficult to treat and manage; only one lupus-specific drug has been successfully developed and approved. Lupus is a leading cause of death among young women. And, most urgently, there still is no cure in sight.  
  4. This is unacceptable.  
  5. We have redefined lupus research to expand efforts beyond merely funding research grants; this fight requires visionary leadership. Our approach addresses the root problems that interfere with progress and sets a course to solve them. 
  6. Our focus is on three critical goals: identify the causes of lupus, discover better ways to control symptoms and find pathways to cure lupus.
  7. We have generated hundreds of millions of dollars in government funding for lupus research, overcome regulatory hurdles and incorporated patient perspectives into the drug development and approval process to put more and better treatments into the hands of people with lupus. 
  8. Your research investment today drives new medical advances – so those suffering from lupus can stop waiting and start living the lives they want
Redefining Lupus Research Narrative
Why do we exist?

We have only one mission – improve the quality of life for people with lupus. Our patient-first research approach delivers results. The Initiatives we funded have supported every lupus research breakthrough during the past 40 years. 

What’s the challenge?

While medical science has made progress, we still don’t know why lupus affects so many people in so many different ways. Nor do we have the right treatments to bring symptoms completely under control so people with lupus can lead the best lives possible.

What’s the urgency?

Today, a lupus diagnosis means waiting for new medical advances while managing potentially fatal symptoms. Lupus is a leading cause of death among young women. We can’t afford to wait – people’s lives are at stake. While dozens of pharmaceutical companies are engaged in lupus drug development and have invested billions of dollars in clinical research, only one new lupus therapy has managed to secure FDA approval. We cannot continue to look at lupus research in the same way. The status quo is unacceptable. We must overcome this challenge and ensure there is an arsenal of treatments for the diverse health effects of lupus. 

What’s our solution?

We have redefined lupus research to expand efforts beyond merely funding research grants. This method alone is not successful. Our approach is innovative and addresses the root problems that interfere with progress and sets a course to solve them. Our focus is on three critical goals: identify the causes of lupus, discover better ways to control symptoms and, ultimately, find pathways to cure lupus. We will accomplish these goals by bringing together leading experts in every arena to determine what’s holding us back and implementing comprehensive strategies to accelerate meaningful advancements in the field.    

What are we doing?

We are tackling lupus from every direction. We not only drive research to deliver the most significant impact on peoples' lives in the shortest time possible, we lead sustained advocacy efforts to secure hundreds of millions of dollars in government funding for additional lupus research that amplifies our efforts, including studies at top medical institutions across our nation. We help overcome regulatory hurdles and incorporate patient perspectives in the drug development and approval process to put more and better treatments into the hands of people with lupus.

Meanwhile, people with lupus need help now, so we deliver education programs and provide vital services through a national network of local chapters, regional offices, the National Lupus Resource Center, and our health educator team to help guide people through the complexities of living and coping with lupus. 

How can you help?

Just as research itself won’t conquer lupus, we can’t do it alone either. That’s where you come in. Donate, raise funds, get involved. Help Us Solve the Cruel Mystery. Your research investment today drives new medical advances – so those suffering from lupus can stop waiting and start living the lives they want. 

Examples of Current Research Efforts
Cause

Department of Defense: Lupus Research Fund

In 2017, the Lupus Foundation of America and its advocates led a multi-year effort and worked with Congress to establish the Lupus Research Program at the Department of Defense (DoD). The program aims to fund research that will advance the field, and lead to breakthroughs in the causes of lupus, its diagnosis and the development of new medicines to prevent and treat the disease.

Congress must appropriate funding for the Lupus Research Program every year. Because priorities can shift, it’s important for the Lupus Foundation of America and its national network of advocates tell members of Congress how important this program is to people with lupus and their loved ones and why it deserves increased funding. 

Control

Biomarkers for Pediatric Lupus Nephritis

Through the Lupus Foundation of America’s Michael Jon Barlin Pediatric Lupus Research Program, Dr. Kathleen Sullivan of the Children's Hospital of Philadelphia has a study to identify biomarkers (which are proteins, genes, and other markers found in the body that are useful for diagnosing a disease, measuring its activity before damage occurs, or measuring the effects of treatment) for kidney disease in children and teens with lupus.

Preliminary studies have shown that the HER2 biomarker has been successful in identifying kidney inflammation. Over time, researchers will be able to determine if HER2 in the urine can predict kidney flares in children with proliferative lupus nephritis. 

The goal of this project is to develop a rapid test to warn children and teens with lupus nephritis, their families, and their healthcare providers of impending flares and kidney damage.

Cure

Stem Cell Research

Dr. Gary Gilkeson and his team at the coordinating Center, the Medical University of South Carolina (MUSC), are leading an innovative research study to evaluate mesenchymal stem cells (MSCs) in lupus. This randomized multi-center, placebo control, phase II study will evaluate the safety and efficacy of MSCs in people with refractory lupus (for whom current therapies aren’t working). 

One third of the participants in the control group will receive a placebo infusion and the two-thirds will receive MSCs taken from the umbilical cord of an unrelated donor. This therapy does not require an individual’s immune system to be suppressed.

The study expects to enroll a total of 81 individuals with lupus for whom current therapy is not working. The study will evaluate whether MSC therapy can decrease lupus disease activity and reduce the need for medications like steroids, which have harmful side effects, and prevent further damage to vital organs.

Stem Cell Study Marketing Support Materials Available Include:

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  • Backgrounder
  • Key Messages