ALR and LRI Congressional Briefing: A New Action Plan for Lupus Research. Great things on the horizon!

Last Tuesday, I had the pleasure of attending a congressional briefing on Capitol Hill, something I've never done before. The event, sponsored by the Alliance for Lupus Research (ALR) and the Lupus Research Institute (LRI), proved that much is being done to increase the visibility and improve our understanding of lupus. Hooray!

Industry professionals, scientists, doctors, patients and legislators all gathered together, showing a renewed commitment to accelerating research and development for this enigmatic disease.  I was so energized when I left the event; there is so much hope for lupus!!

While the nitty gritty of the new action plan for Lupus is below, and you can read more about it here, here are a few things that got me excited about the future of lupus medicine and research:

Precision medicine: Via video, we heard from Dr. Francis Collins, Director of NIH. I loved hearing that one of the primary goals of lupus R&D today is to, upon diagnosis, project the trajectory of a patient's disease. Can you imagine being able to predict which patient will develop complications, or organ involvement, so that treatment can be given to potentially prevent organ damage or severe side effects from occurring? That's so exciting!

We also heard from Dr. Robert Carter, whose slides are seen here. He talked about the importance of pinpointing biomarkers to be able to make those precise disease determinations.

Patient certainty:  The room was filled with individuals who absolutely believe that while the prognosis for lupus has improved, it could and should be a lot better. It was exhilarating to be surrounded by so many positive, hopeful, undeterred people, several of whom were the chairs of the Congressional Lupus Caucus. Representative Ileana Ros-Lehtinen (R-FL), in particular, talked about improving the certainty for lupus patients, a word that I've never been able to associate with my disease, but sure would love to!  She said:

“Continuing to advance research is a critical goal of the Congressional Lupus Caucus,” said Caucus co-chair Representative Ileana Ros-Lehtinen (R-FL). “The new Action Plan represents a path lined with possibilities for those living with lupus, including my step-daughter. Through her experiences, our family knows how hard living with lupus can be, so I am committed to helping improve the quality of life for those suffering from this challenging disease.”

Training for a cure: Dr. Stephen Katz, Direction of NIAMS, gave a great overview of where the future of lupus research is headed. He said the job today is to train the scientists of the next 20 years, so that we can get closer to a cure. We've all heard that concept before, but when he quantified the years, Deirdre and Bernadette immediately came to mind. In twenty years, they'll be the age I was at the time of my diagnosis. Thinking that more funding today could bring a faster diagnosis, better treatment, and possibly a cure for my little gals, should they need them, makes me so hopeful!!


The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), on behalf of the National Institutes of Health (NIH), recently released the NIH Action Plan for Lupus Research – a new research roadmap on the prototypical autoimmune disease. This comprehensive strategy was developed in response to a request from the Congressional Lupus Caucus and builds upon decades of NIH research efforts, yielding a wealth of new information toward improving our understanding of lupus. Join us to learn about the priority areas that NIH has identified and what it means for patients and scientists. Moderated by Margaret G. Dowd, President and CEO of the Lupus Research Institute.


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