2019: A Year of Tremendous Growth
2019: A Year of Tremendous Growth

The Lupus Research Alliance (LRA) boldly pursued breakthroughs on the many fronts of lupus research in 2019—allowing the organization to fast-track avenues for new treatment options, including those orchestrated through our own clinical trials network. Throughout the year, the many brilliant scientists who received LRA funding brought new ideas to the table, ushering in discovery after discovery. These minds—the world’s best and brightest—helped the LRA achieve breakthroughs in directions that once were considered insurmountable.

In the process, the LRA empowered compassionate individuals by giving them a platform to stand up to lupus … to become involved … and to fund some of the world’s most pioneering lupus research initiatives.
The results of 2019—combined with those of previous years—are staggering. As the world’s largest private funder of lupus research, we have granted nearly $7.5 million to lupus research programs and delivered breakthroughs that are speeding up the development of new treatments.

Investing in Trailblazing Research

As the world’s leading authority in lupus research, the Lupus Research Alliance funded 15 scientists to

  • Six scientists received $1.8 million in grants through our two-year Novel Research Grants program. Supporting advances in novel hypotheses and/or technologies, this award aims to propel new research concepts forward. Supporting highly meritorious research, this program aims to discover molecular pathways and therapeutic targets that will lead to new treatments.
  • Our up-to-three-year Target Identification in Lupus granted $3.6 million for six research projects aimed at characterizing lupus disease pathogenesis …identifying targets for treatment … facilitating evaluation.
  • The Dr. William E. Paul Distinguished Innovator Award in Lupus and Autoimmunity of up to $1 million challenged our 2019 awardees: Fabienne Mackay, PhD and Jeffrey Rathmell, PhD. These exceptional thinkers aim to shift the lupus paradigm with bold explorations.
  • Our once-a-year Lupus Insight Prize of $100,000 went to Dr. Ignacio Sanz (see cover story) in recognition of the seminal scientific discovery he made in B cell research.

Leading with Extraordinary Clarity and Grace

The LRA is enormously grateful to Mary K. (Peggy) Crow, MD for her more than 10 years of devoted service and leadership as the organization’s Co-Chair of our Scientific Advisory Board. Dr. Crow’s tenure concludes on December 31st.

“It’s well known that Dr. Crow has brought vision … leadership … expertise to the LRA—but she also inspired all of us by her uncompromising determination to find answers for those who suffer from this debilitating disease,” said LRA President and CEO Kenneth M. Farber. “Although she is stepping down as Co-Chair, we are fortunate that Dr. Crow will continue to work with the LRA in several other capacities.”

Dr. Crow is Physician-in-Chief and Chair of the Department of Medicine at Hospital for Special Surgery and is Chief of the Division of Rheumatology at HSS and NewYork-Presbyterian/Weill Cornell Medical Center.

Collaborating and Sharing Ideas

Throughout its history, the LRA has played a pivotal role in bringing together the key players in the fight against lupus and 2019 is no exception.

More than 100 of the world’s top scientists in lupus research and treatment gathered on October 20-22 for the LRA’s 2019 annual three-day Forum for Discovery scientific conference.

Researchers shared their promising discoveries funded by the LRA, sparking dynamic discussion and exchange of ideas that may well lead to the next breakthrough.

At the conclusion of his presentation on metabolic networks and unbiased genetic screens to identify targets for lupus, Jeffrey Rathmell, PhD, stressed the inestimable value of the Forum for Discovery gathering.

“The diversity and promise of the science discussed at this meeting are impressive,” said Dr. Rathmell. “As investigators, we tend to focus on our own work. But this forum allows us to see the big picture and the field at a higher level … to learn what our colleagues are working on … and to look to ways to collaborate together to tackle this very complex disease. It’s very impressive!”

And on September 19, the LRA hosted a collaborative meeting entitled Microbiome in Lupus. Thanks to the support and leadership of Board Member, Bill Wolfe—the LRA gathered world experts from a cross-section of varied disciplines to discuss how the burgeoning field could benefit people with lupus.

What’s the significance of gut bacteria or microbiome? For one, there are more microbiome cells than human cells in the body. Secondly, microbiome are capable of communicating with the immune system to fight infection.

Evidence already shows that bacterial imbalances are linked to immune-related diseases and even some cancers. More than ever, we’re finding out just how important these microbes are. This is why the LRA is open to the possibility of devoting funds for microbiome research in the near future, building on the organization’s past work in this fascinating field.

Accelerating Drug Development

Recognizing the need to address the way clinical trials are conducted—and to speed drug development—the LRA formed an affiliation with Lupus Therapeutics in 2017.

Much progress has been made since then. “Lupus Therapeutics serves as the organization that oversees the Lupus Clinical Investigators Network (LuCIN) we created with the LRA,” said Al Roy, Executive Director of Lupus Therapeutics. “We’re on a mission to accelerate drug discovery for all patients living with lupus.”

When the program started, about 30% of our sites participated in LuCIN trials. Today, all 57 sites participate—and many are simultaneously conducting more than one trial.

Partnering with Pharmaceuticals

Since our inception in 1999, the LRA has advanced scientific lupus research with the help of pharmaceutical companies, and in 2019, we formed a major alliance.

In August of this year, we formed a unique new partnership with the Celgene Corporation—which will be providing $3 million for bold cutting-edge research projects. The thrust of the research will focus on understanding the underlying mechanisms of disease, addressing heterogeneity (how much the disease varies from person to person), and identifying novel biomarkers.

Breaking Through the Fog

Lupus has an impact on the brain in a large number of patients. A staggering 95% of people with the disease experience neuropsychiatric lupus (NPSLE), a wide range of brain-involved symptoms like not thinking clearly, forgetting things or even seizures, stroke and psychosis.

To understand the cause of these types of brain involvement, the LRA has teamed with Harvard Brain Tissue Resource Center (HBTRC) to develop a program to recover donated brains from deceased individuals with lupus.

The incredible people who commit to donate their brains after they pass away are giving the world a priceless gift that can advance lupus treatment for generations to come.

Transforming Goodwill into Research

People make a difference—that’s something the LRA knows for certain. And we don’t have to look any further than our Walk with Us to Cure Lupus events.

Walkers—many of whom have lupus or have a close relationship with someone who has the disease— are invested in helping the LRA fund critical lupus research initiatives.

In 2019, the determination of walkers like

Matthew Niskanen helped to generate nearly $2 million, bringing the total raised by walks all over the country to over $41 million! Here’s one reason why: “I’m not looking for a cure for me,” said Matthew.

“I’m looking for a cure in case one of my kids gets diagnosed with this disease — and for the kids of other parents. I don’t want them go through what I’ve had to go through.”

Together, ManyOne Can make a difference!
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