May 31, 2024
For centuries writers have described May as a time budding with promise. How apt that it is also when the world recognizes Lupus Awareness Month. With 31 days of May behind us, we celebrate the community that has banded together to make a difference.
We appreciate all your amazing contributions throughout the month to:
Advance the Research Conversation
- The lupus community came together full force at the first-anniversary Lupus Accelerating Breakthroughs Consortium meeting, voicing the perspectives and priorities of people with lupus to representatives from federal agencies such as the FDA, medical societies, advocacy groups, industry, researchers and scientists. Your message was heard, and plans for action are in the works.
- The annual LuCIN Community Meeting, the biggest thus far, convened renowned lupus clinical research teams, people living with lupus and advocates, along with industry representatives from 30+ companies. Hosted by Lupus Therapeutics, the clinical research affiliate of the LRA, the multi-day meeting had an action-packed agenda addressing new treatment paradigms, potential new therapies, challenges with treating lupus and recruiting/conducting clinical trials. The discussion concluded with a focus on diet and the microbiome. The energy and community provided a sense of hope and excitement for those impacted by lupus and the next phase of lupus care.
Educate and Amplify
- Every single day, your voices were amplified by using the tools provided in the Lupus Awareness Month Social Media Toolkit – and much of the content can continue to be shared in the weeks to come so keep on sharing!
- LRA champion Selena Gomez posted on Instagram to raise awareness of lupus, expressing support and sharing resources for people with lupus who struggle with mental health.
- As our May Community Inspiration, LRA Board Member Molly McCabe shared her personal journey from opera singer to outspoken lupus advocate, suggesting many ways the community can make a difference.
- The NYC metro community helped raise awareness of the need for equity in lupus care at the Equity for ALL event on Lupus Call to Action Day May 1 hosted by the National Minority Health Association in collaboration with LRA, Healthfirst, Global Healthy Living Foundation, NYU Langone Health, UCB, Biogen, Aurinia Pharmaceuticals Inc., and BlackDoctor.org.
Raise Funds for Much-Needed Research
- Enthused walkers converged on MetLife Stadium to raise nearly $500,000 for lupus research at the New Jersey Walk with Us to Cure Lupus.
- On World Lupus Day alone, supporters like you contributed nearly $15,000 for lupus research in just 24 hours!
- Our 10th Anniversary Willie Colon Golf Outing, a sold-out event in June hosted by former NFL Super Bowl Champion and LRA Board member, is expected to raise $450,000.
Move Congress
- Your advocacy efforts to Congress inspired 64 Representatives — the most ever — to sign this letter from the Congressional Lupus Caucus stressing to the Appropriations Committee leadership the urgent need for research funding in Fiscal Year 2025.
But as we turn the calendar over to June, May’s momentum must be maintained as promise turns to progress. Join us June 3 for a live webinar about engineered cell therapies being evaluated for people with lupus – an exciting area of increasing interest.
