2020 Digital Lupus Advocacy Summit
The nation's largest lupus advocacy event went digital – and became even bigger! At the first-ever Digital Summit, attendees learned from experts in the field about the latest in lupus research, connected with hundreds of fellow lupus advocates, and learned how to advocate for yourself and for the entire lupus community throughout the year. All of this, and much more, took place in an immersive, experiential, online environment.
The first-ever Digital Lupus Advocacy Summit!
The 2020 National Lupus Advocacy Summit was slated to be held March 15-17, 2020 in Washington, DC. At the Lupus Foundation of America, the health and well-being of people with lupus is our highest priority. On March 10, due to the growing concern around COVID-19, and in alignment with recommendations laid out by the U.S. Centers for Disease Control and Prevention (CDC) and other health experts, all in-person Summit activities were cancelled
But we don't let anything stop our advocacy, and within days, the event was transitioned to the 2020 Digital Lupus Advocacy Summit, an entirely online event and the very first of its kind.
On March 16, thousands of lupus advocates logged into the online environment to hear from leading lupus researchers about the latest breakthroughs and those soon to come, as well as learn from experts in the field about how to navigate the healthcare system and advocate for themselves and the entire lupus community throughout the year. In the Exhibit Hall, advocates connected with our partners in the fight against lupus, and networked with their fellow advocates in the Networking Lounge.
On the following day, lupus advocates contacted their members of Congress to tell the lupus story and generate support for policies to improve the lives of all people with lupus. More than 450 advocates who had registered to attend the in-person Summit participated in over 170 conference calls with their members of Congress, while thousands more contacted their members digitally.
Click here to read more about the 2020 Summit and its impact.
Registration for the 2020 Digital Lupus Advocacy Summit has now closed, and on-demand viewing of the sessions is no longer available. Please sign up as an advocate to receive information about future in-person and digital events.
All times are Eastern
10:00 am | 2020 Digital Summit opens
11:00 - 11:15 am | Opening remarks
11:15 - 12:30 pm | Today & Tomorrow in Lupus Research
2019 was a significant year in lupus research, and 2020 promises to push us even further in our pursuit of quicker diagnoses and more safe and effective treatments. In this session, you'll hear from leading lupus researchers about the recent breakthroughs in lupus drug development and those soon to come.
- Leslie Hanrahan (Moderator)
Lupus Foundation of America - Robert Huizinga, Ph.D, RN, CNeph(C)
Aurinia Pharmaceuticals - Micki Hultquist, MS
AstraZeneca - Joan T. Merrill, MD
Oklahoma Medical Research Foundation - Jaime Miller, Ph.D, MD
Lupus Warrior
11:15 - 12:30 pm | Youth Congress Session 1: What is Research?
In a session designed specifically for lupus advocates under 21, our partners at the Childhood Arthritis and Rheumatology Research Alliance will discuss their work to advance our understanding of pediatric lupus and how youth can be involved and participate in those efforts.
- Vincent Del Gaizo
Childhood Arthritis and Rheumatology Research Alliance
12:30 - 12:45 pm | Break
12:45 - 1:45 pm | Meet the Lupus Researchers
Hear from two of the leading experts in lupus research about their work to advance our understanding of lupus and identify new safe and effective treatments for the disease, including through the innovative study of mesenchymal stem cells.
- Susan Manzi, MD
Allegheny Health Network - May Choi, MD, FRCPC
University of Calgary - Gary Gilkeson, MD
Medical University of South Carolina
12:45 - 1:45 pm | Youth Congress Session 2: Creative
Learn about the work of our LFA Design team, and work with them on developing a holiday card for use by the Lupus Foundation of America.
- Alisha Ladenburg
Lupus Foundation of America - Kym Norris
Lupus Foundation of America - Michael Philip
Lupus Foundation of America
1:45 - 2:15 pm | Break
2:15 - 3:00 pm | Navigating the Healthcare System
Quality, affordable healthcare is critical for people with lupus. Learn how to take control of your healthcare and learn about the different federal and state assistance programs, including Social Security Disability Insurance, available for people with lupus.
- Ashley Holden
Lupus Foundation of America - Pat Wildman
Lupus Foundation of America
2:15 - 3:00 pm | Youth Congress Session 3: Advocacy
In the final session designed specifically for youth, learn how to be an advocate for yourself and for others in a variety of different ways.
- LFA Advocacy & Government Relations Team
3:00 - 3:05 pm | Break
3:05 - 3:45 pm | Advocacy x 365
The Summit is just one part of our advocacy strategy. Join us for a deep dive into our year-round advocacy efforts and hear how you can be involved with them to help us continue securing advocacy victories for the entire lupus community.
- LFA Advocacy & Government Relations Team
3:45 - 4:00 pm | Break
4:00 - 5:15 pm | Storytelling & Preparing for Capitol Hill
To close out the day, the Foundation's Advocacy & Government Relations team will discuss the issues we will be taking to Capitol Hill, prepare you to tell your story in the most impactful way, explain how to structure a congressional meeting, and make sure you are fully prepared for three successful meetings with your members of Congress the following day.
- LFA Advocacy & Government Relations Team
Note that this session is only available for advocates who were register to attend the 2020 National Lupus Advocacy Summit in person.
On Tuesday, March 17, all advocates will have an opportunity to engage with their members of Congress to build support for policies that are improving the lives of people affected by lupus.
- Advocates who were registered to attend the in-person Summit already have meetings with their members of Congress scheduled, and those meetings are on as planned via phone conference. More details and meeting schedules will be shared with this group as they are available.
- Advocates who were not registered to attend the in-person Summit will be invited to participate in Virtual Advocacy Day. Through our website, advocates will be able to look up their members of Congress and send them an email explaining how lupus has affected them, and what they can do to support the 1.5 million Americans living with lupus.
2020 Summit Sponsors
