Mar 23, 2020

Largest Lupus Advocacy Summit transforms to digital event amid Coronavirus concerns


Lupus Foundation of America Reimagines Summit to a Digital Format, Asks Congress to Support Lupus Research and Education Programs

The Lupus Foundation of America’s National Lupus Advocacy Summit held March 16 – 17 was reimagined to a digital event and drew thousands of lupus advocates from across the nation to urge Capitol Hill to increase funding for lupus research and education programs.

While the event was changed from an in-person format to a digital event due to concerns of the coronavirus (COVID-19), the Foundation and its advocates did not let that deter them from their mission.

Together, Lupus Foundation of America advocates reached hundreds of Congressional offices via conference calls in lieu of in-person meetings and via email to help ensure critical lupus programs receive the funding they need.

Advocates urged members of Congress to support:
  • $10 million for the National Lupus Registry at the Centers for Disease Control (CDC);
  • $10 million for the Lupus Research Program at the Department of Defense (DoD);
  • $2 million for the lupus program at the Office of Minority Health (OMH); and
  • $44.7 billion for the National Institutes of Health, which provided $121 million for lupus research last year.
These programs are critical to advancing lupus research. 

They are designed to increase the understanding of lupus, its causes and how it can be treated, including in children and teenagers; speed time to diagnosis and ensure people with lupus are receiving the care they need as soon as possible; and increase enrollment in clinical trials, particularly among minority communities, which can accelerate the development of new, safe and effective treatments for lupus.
 
The National Lupus Advocacy Summit takes place annually in Washington, D.C. and is the largest lupus advocacy event in the country.

This year, it was transformed to a digital event amid concerns of COVID-19, and provided lupus advocates from across the country access to a two-day online advocacy experience. 

Attendees gathered virtually via an immersive online platform and took part in panel sessions featuring expert discussions on the latest lupus research, as well as education discussions on topics like managing healthcare.

Attendees were also able to engage with partners in the fight against lupus in a virtual exhibit hall and connect with fellow lupus advocates via chat rooms.

In addition, the Summit featured a virtual Youth Congress with specific programming for young people with lupus and their families. 
“I’ve attended the Lupus Foundation of America’s National Lupus Advocacy Summit for several years,” Karen Miller, Lupus Foundation of America Advocate, New York, said. “I was concerned that the event wouldn’t happen due to the coronavirus, but was thrilled to see the Foundation pivot so quickly and put together a digital event for us to attend from our homes. I know that we still made a huge impact on Capitol Hill – our elected officials heard our stories and I’m confident that they will support funding for lupus programs that are so important to advancing treatment development and the understanding of this disease.”
“Advocacy is a critical component toward speeding research breakthroughs for people with lupus and their families,” Stevan W. Gibson, president and CEO, Lupus Foundation of America, said. “The National Lupus Advocacy Summit is annually the largest lupus advocacy event in the nation, and despite the challenges around COVID-19, our lupus community stepped up and made sure their voices were heard loud and clear. Not only did hundreds of advocates contact their members of Congress via email, but we also managed to have many of our advocates participate in conference calls with their Congressional offices. The response we received from Congress is encouraging, and we look forward to working with them to continue increasing funding for programs that improve the lives of people impacted by lupus.” 
In addition to the support of our donors and Board members for helping to make the 2020 National Lupus Advocacy Summit possible, we greatly appreciate the unrestricted grants from the following organizations: Amgen, AstraZeneca, Aurinia Pharmaceuticals, Genentech, GlaxoSmithKline, Idorsia Pharmaceuticals Ltd., Mallinckrodt, Pfizer and PhRMA. 

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