National Lupus Advocacy Summit brings powerful voices to Capitol Hill to advocate for all Americans living with lupus

Hundreds of lupus advocates from 42 states gathered in Washington, DC for the Lupus Foundation of America’s National Lupus Advocacy Summit, held April 19-21. The Summit is the largest lupus advocacy event in the nation, giving lupus warriors a platform to meet with their members of Congress, share the impact of the disease, and let Congress know why federal funding for lupus programs and research is crucial to improving the lives of people with lupus. Thousands more participated virtually, amplifying the voices of the lupus community nationwide by reaching out to their members of Congress through digital channels.

During the three-day Summit, participants also had the opportunity to hear from leading lupus experts, share their experiences with lupus with peers, and learn about the latest advancements in lupus research and patient care. Advocates met with congressional offices on the final day of the Summit to share personal stories and press for action on key priorities, including:
 

• Increasing funding for critical lupus-specific research, awareness and education programs, including:
  •  $15 million for the Lupus Research Program at the Department of Defense (DoD)
  • $20 million for the Centers for Disease Control and Prevention (CDC) National Lupus Patient Registry Program 
  • $4 million for the National Lupus Training, Outreach & Clinical Trial Program at the Office of Minority Health (OMH)
  • $51.3 billion for the National Institutes of Health (NIH), the world’s largest funder of lupus research
• Ensuring people with lupus have timely access to care and treatments
• Limit prior authorization and step therapy requirements
• Require that copay financial assistance counts towards health insurance cost sharing obligations

“The National Lupus Advocacy Summit serves as a powerful demonstration that the lupus community is united, persistent, passionate, and needs to be heard,” said Louise Vetter, President & CEO of the Lupus Foundation of America. “Every lupus story shared helps Congress to understand the importance of protecting access to life-changing care and treatments and continuing to invest in impactful lupus research. Lupus advocates’ voices are powerful and united, making it clear that progress depends on relentless support for this misunderstood disease. Advancing lupus care and research must remain a national priority.”

The Summit also honored leaders whose dedication has made a lasting impact on the lupus community. At the Lupus Heroes Celebration, three extraordinary advocates received top honors:
 

• The 2026 Lupus Research Hero Award was presented to Lindsey A. Criswell, M.D., M.P.H., D.Sc., for her contributions to lupus research throughout her five-year tenure as the Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). Throughout her career, Dr. Criswell has worked to deepen understanding of this complex disease while helping to shape a stronger, more inclusive research landscape. Her leadership has helped drive progress toward better treatments, more personalized care, and ultimately, better outcomes for those living with lupus. In addition to her research contributions, she is a committed mentor and leader, supporting the next generation of scientists and advancing efforts that bring hope to the lupus community.
• The 2026 Barlin Family of the Year Award was presented to the Cancio-Bello Family, owners of Miami Management, whose family-owned business has contributed more than $153,000 to date through sponsorship and fundraising efforts for Team Bethany at the Walk to End Lupus Now® in Miami. What began as a small family team grew alongside their property management company into a longstanding sponsorship. Bethany, the daughter of owner Guillermo, has been living with lupus for decades. During the past 15 years, the family has leaned on the Lupus Foundation of America’s Southeast Region for support—and in turn, has become the Miami Walk’s longest-tenured sponsor with continuous sponsorship since 2013. Their commitment is unparalleled and embodies what it means to rally family, friends and coworkers in the fight to end lupus.
• The 2026 Sandra C. Raymond Advocate of the Year Award was presented to Lynnai Jay, a longtime passionate advocate, ambassador, support group facilitator, Lupus Research Action Network mentor, and speaker for the Lupus Foundation of America. She generously shares her personal knowledge of the Foundation’s resources, as well as insight into her own experiences as a lupus warrior, to help empower, support and educate others. She has done this through speaking at the PA Conference for Women, Community Health Workers Conference, and as a panelist for her local 2025 Lupus and You Empowerment Conference. Lynnai also regularly engages with the media to raise awareness about lupus and has participated in industry events alongside the Foundation’s staff, sharing the patient perspective. Lynnaia also continues to support and serve as the listening ear her lupus community needs as a support group facilitator, and has made her voice heard year after year by attending five National Lupus Advocacy Summits. 

The Lupus Foundation of America sincerely thanks its Board of Directors, generous donors, and corporate partners whose support helped make the 2026 National Lupus Advocacy Summit possible: AstraZeneca, Biogen, Cabaletta Bio, EMD Serono, Genentech, GSK, Novartis, PhRMA, UCB,and Viatris.