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2019 National Lupus Advocacy Summit

Turning Capitol Hill Purple

On March 4 and 5, more than 350 lupus advocates converged on Washington, DC to connect with each other, hear about the latest in lupus research, and urge their lawmakers to support funding for critical lupus research and education programs that will accelerate the search for new treatments and improve the lives of people affected by lupus.

The National Lupus Advocacy Summit is the premier lupus advocacy event in the nation, bringing together the entire lupus community in pursuit of our shared goal: a world without lupus. 

In 2019, lupus advocates from across the country shared their story with Congress and urged them to support policies that will increase funding for research and accelerate the development of new treatments.

Advocates at the 2019 Summit helped us build on the success of previous Summits and further advance policy priorities that are accelerating the search for new lupus treatments, better educating physicians who diagnose and treat the disease, and much more. In addition to meeting with their members of Congress, advocates who attended the two-day Summit heard from the leading researchers and physicians in the field and connected with and learned from their fellow advocates. 

Click here to read more about the 2019 Summit and its impact.

By attending the Summit, I know that I’m not alone as a young adult with lupus and that we have a voice – a voice that can make a difference in the fight against this disease and that can urge members of Congress to join our fight.
Lydia Sundberg, 18, Gurnee, IL

Schedule of Events
Monday, March 4

8:00 - 9:00 am       |  Registration and breakfast

9:00 - 9:30 am       |  Opening remarks

9:30 - 10:30 am     |  Panel: The State of Lupus Research
There has never been a more exciting time in lupus research and drug development. Hear from leading lupus researchers about how far we've come and the incredible promise that is on the horizon.

  • Karen Costenbader, MD, MPH (Moderator)
    Brigham and Women's Hospital
    Chair, Lupus Foundation of America Medical-Scientific Advisory Council
  • Joan T. Merrill, MD
    Director of Clinical Projects, Arthritis, & Clinical Immunology Program
    Oklahoma Medical Research Foundation
  • Leslie M. Hanrahan
    Senior Vice President, Education & Research
    Lupus Foundation of America

9:30 - 12:00 pm     |  Kids' Congress
This session is designed exclusively for youth and young adults affected by lupus and will focus on learning to track symptoms and triggers, time-management, and much more. The space will also be open throughout the day for youth to relax and connect with each other.

10:30 - 10:45 am   |  Break

10:45 - 12:00 pm   |  Panel: Emerging Treatments
As we learn more about lupus and how it affects the people living with it, the way we treat lupus will evolve. Learn from companies currently conducting lupus clinical trials about the promising new treatments for lupus and what they will mean for the people living with the disease.

12:00 - 1:30 pm     |  Lunch session: The Promise of Mesenchymal Stem Cells
The Lupus Foundation of America is partnering with the National Institutes of Health to fund a groundbreaking study into using mesenchymal stem cells to treat lupus. Hear directly from Dr. Gary Gilkeson, the study's Principal Investigator, about the science behind the study and its vast promise.

  • Kathleen A. Arntsen (Introduction)
    President & CEO
    Lupus and Allied Diseases Association, Inc.
  • Gary S. Gilkeson, MD
    Medical University of South Carolina
    Chair Emeritus, Lupus Foundation of America Medical-Scientific Advisory Council

1:30 - 1:45 pm       |  Break

1:45 - 2:30 pm       |  Department of Defense: Lupus Research Program
The Lupus Research Program was established by Congress in 2017 and in May 2018 the Department of Defense announced the award of nearly $5 million to 13 innovative and impactful lupus research projects. Hear about these projects and the importance of the Lupus Research Program.

  • Susan Manzi, MD, MPH (Moderator)
    Allegheny Health Network
    Medical Director & Board Chair, Lupus Foundation of America
  • Daniel Monson, Ph.D.
    Program Manager, Lupus Research Program
    Department of Defense Congressionally Directed Medical Research Programs
  • Toni Grimes
    Peer Reviewer, Lupus Research Program
    Major, U.S. Army (Retired) & Lupus Advocate

1:45 - 2:30 pm       |  Kids' Congress

2:30 - 2:45 pm       |  Break

2:45 - 4:00 pm       |  Advocacy training: Storytelling & Preparing for the Hill
Before you head to the Hill on Tuesday, you'll learn about the issues we'll be talking to members of Congress about and their importance for the entire lupus community, how to tell your story in an impactful way, how to navigate congressional office buildings, and much more.

4:00 - 4:05 pm       |  Closing remarks

4:05 - 5:00 pm       |  Delegation prep & family social
Develop a plan for your Hill meetings on Tuesday - who will introduce the group, who will make the asks, etc. and connect with your fellow advocates.

6:00 - 8:00 pm       |  All-Star Reception & Advocacy Awards

Tuesday, March 5

7:30 - 9:00 am          |  Breakfast

8:00 am - 4:00 pm  |  Meetings with members of Congress
Meet with your members of Congress to tell the lupus story and urge them to support policies that will advance the fight against lupus. Lunch on your own.

3:00 - 6:00 pm          |  Hospitality room at The Mayflower Hotel open
Recap your day with Foundation staff and your fellow advocates, complete your Congressional Meeting Reports, and grab a snack before heading back home.

2019 Summit Sponsors

Biotechnology Innovation Organization

Faegre Baker Daniels

Lupus and Allied Diseases Association, Inc.

Medscape, LLC