July 17, 2018
The Lupus Research Alliance New York City Lupus Research Reception featured incredible speakers whose remarks are well worth sharing: Larry Schreiber, President of Empire BlueCross BlueShield; Meggan Mackay, MD, MS, Investigator at the Feinstein Institute for Medical Research; and Kenneth Farber, President & CEO, Lupus Research Alliance.
The take-aways are clear – companies fund causes like lupus because their employees care about the cause; exciting discoveries are improving how lupus is treated; and there are many ways people with lupus and those who love them can get involved to speed up the process.
Representing one of our most committed sponsors of the Lupus Research Alliance, Larry Schreiber described why companies like Empire Blue Cross Blue Shield support philanthropic causes like lupus. “It’s much less about the corporation, but about individuals in the company who have a passion for a cause. As a guy who loves running, when I learned about lupus symptoms like severe fatigue and joint pain that make movement difficult, I made the decision to support the Walk program.” Mr. Schreiber also described why he wears a purple New York Jets hat to events like this, the beach, the pool. “It starts a conversation. It’s a way for me to talk about lupus and the phenomenal work the Lupus Research Alliance is doing.”
Meggan Mackay, MD, MS
Dr. Mackay described how research led by Dr. Betty Diamond (2018 Lupus Insight Award recipient) resulted in a new clinical trial from uncovering the underlying reason so many people with lupus have cognitive impairment – problems with thinking, concentration and memory.
Their breakthrough showed that the autoantibodies of lupus damage the way brain cells communicate with each other through neurons that transmit nerve impulses across the synapses or gaps between them. Using highly sophisticated imaging, they found that in people with lupus the clean-up squad of microglial cells which clear out dead neurons from nerve tissue becomes over-active and destroys healthy neurons and synapses. The team then discovered that a common and safe medication for blood pressure, ACE inhibitors, can control the activation of the microglial cells. Check our website, LupusTrials.org, for news of a clinical trial about to launch that will test the effectiveness of ACE inhibitors to prevent cognitive impairment in people with lupus.
Pointing to two success stories, Ken Farber conveyed the tremendous hope that begins with research. In addition to funding initial discoveries that led to the development of the one treatment specifically for lupus – Benlysta® – Ken shared how the Lupus Research Alliance is leading a comprehensive investigation of existing drugs as possible treatments for lupus. “We analyzed every single one of the 4,000 drugs approved for other conditions and came up with a list of 125 that just might work in lupus. One is a drug by Janssen called Stelara® that works incredibly well for psoriasis by tamping down inflammatory chemicals produced by the body. We convinced Janssen to try Stelara® in lupus. Phase 2 results showed it extremely positive results, and now a Phase 3 trial is testing it in a larger group of lupus patients. But no matter the results, we know that our strategy to pursue already-approved drugs works!”
Jonathan Marks, Senior Regional Development Director, Lupus Research Alliance
Jonathan closed with an inspiration call to action. “We know that research is the key ingredient to unlocking better treatments and ultimately a cure for lupus; but we can’t do it without YOU!” Listed below, is a variety of activities that you may want to become involved with:
Dare to Ask
Ask your employer to support your cause and advance lupus research. They can sponsor a Walk with Us to Cure Lupus event, match the funds you raise, send a team to Walk, even donate goods or services. Impress them by explaining that every dollar they give goes directly to lupus research programs because our Board of Directors covers our operating and fundraising costs.
Become a Lupus Advocate
Become an advocate for more governmental funds for lupus research. Reach out to your local, state, and federal representatives about lupus advocacy initiatives. Use our Legislative Action Center to urge your legislators to support the Lupus Research Program.
Joining a clinical trial can be a way you can help new medications and treatments come to the lupus community. To learn more about clinical trials visit lupustrials.org and talk to your doctor.
Spread the Word
Follow us on social media, read through our weekly emails, and spread the news! Read something interesting or exciting? Share it with your friends and family. More awareness leads to more fundraising, which allows for more research.
The message anyone in the lupus community should hear – don’t stay on the sidelines. Get in the game and get involved!