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2019 National Lupus Advocacy Summit

Turning Capitol Hill Purple

On March 4 and 5, lupus advocates will converge 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.

Sign up as an advocate to participate in Virtual Advocacy Day on March 5!
Raise Your Voice

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. Join lupus advocates from across the country to share your story with Congress and urge them to support policies that increase funding for research and accelerate the development of new treatments.

In 2018, the Summit helped secure more than $14 million in federal funding for critical lupus research and education programs - but more must be done.

By attending the 2019 Summit, you'll help us build on that success 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 attending the two-day Summit will hear from the leading researchers and physicians in the field and connect with and learn from their fellow advocates. 

Participate in Virtual Advocacy Day

As advocates in Washington head to Capitol Hill on March 5, participate from home by contacting your members of Congress and urging them to support our priority issues. Sign up as an advocate to receive more information.

Sign Up

Preliminary 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.

Registration Details

Registration for the 2019 National Lupus Advocacy Summit is now closed. If you have questions about an existing registration, please contact us.

Your registration fee of $50 provides you with an all-access pass to the 2019 National Lupus Advocacy Summit. On March 4, you'll hear from the world's leading lupus researchers about the latest breakthroughs, learn from your fellow advocates about living well with lupus, and receive all the advocacy training you'll need for your meetings on Capitol Hill the following day - and with such a busy day, we'll provide all three meals and refreshments to keep you energized throughout!

On day two of the Summit, join us for breakfast to make sure you're fueled up before you head to Capitol Hill to meet with your members of Congress. We'll schedule your meetings and provide you with a mobile app to navigate Capitol Hill, keep notes on your meetings, engage your members of Congress on social media, and much more. After your meetings, head back to the hotel to recap the day with Foundation staff and your fellow advocates and grab a snack before heading home. 

Hotel Information

The 2019 Summit will be hosted by The Mayflower Hotel. Our room block is now closed - it may still be possible to reserve a room at The Mayflower, but you will need to contact them directly and the discounted rate for Summit attendees is no longer available. You are not required to stay at the host hotel to attend the Summit.

Congressional Meetings

The Foundation will use the address you provide when registering to schedule meetings with your three members of Congress. Click here to find out who represents you in Congress. Please do not attempt to schedule your own meetings, and let Travis Smith know if you have any issues related to your meetings.

Youth Programming

For lupus advocates under 21 and their families, the Summit will feature a youth track focusing on topics specific to growing up with lupus like nutrition, time management, and more. And in The Lodge, available throughout the Summit, youth advocates can relax and connect with their peers.

Traveling with Lupus

If you are living with lupus and planning to attend the Summit, check out our guide to traveling with the disease and this helpful packing list as you prepare for your trip to Washington. If you have specific nutritional needs or need ADA hotel accommodations, please contact Travis Smith after you have registered for the Summit.

Summit Scholarships

Each year, the Foundation is proud to provide scholarships for advocates to attend the Summit. Unfortunately, we are not able to provide scholarships for everyone who applies - as much as we wish we could. The deadline to apply for a scholarship was December 21 and submissions are now closed.

Learn More

2019 Summit Sponsors

Biotechnology Innovation Organization

Faegre Baker Daniels

Lupus and Allied Diseases Association, Inc.

Medscape, LLC