Last week, over 3,700 lupus advocates from all 50 states and 76 countries across the globe registered for the Lupus Foundation of America’s Digital Lupus Advocacy Summit. The successful event featured several engaging panel discussions, bringing the latest lupus news and information – from COVID-19 to new lupus treatments – right to participants’ fingertips. While the live event may be over, recorded panel sessions are available to view now until April 2 by simply visiting lupus.vfairs.com and visiting the auditorium.
During the first two days of the Lupus Foundation of America Digital Lupus Advocacy Summit, advocates gathered virtually to participate in panel sessions and live Q&A’s with lupus experts, as well as people with lupus who shared their perspective and experiences. The event also enabled lupus advocates from across the globe to connect with each other via chat rooms to share experiences, to ask Lupus Foundation of America staff questions, and have discussion with many of our partners that have joined us in the fight against lupus.
Digital Lupus Advocacy Summit Panel Highlights
Panel discussions brought advocates the latest in lupus news, research and drug development, and care and support services, including the most important information about COVID-19 for people living with lupus. During this panel, Dr. Ashira Blazer shared findings from her NYU cohort study that found patients with lupus and COVID-19 were highly likely to be hospitalized – and that comorbidities, non-white race and higher BMI increased the risk of hospitalization. She also provided an overview of the currently approved COVID-19 vaccines, including recommendations for people with lupus. Lupus warrior and advocate Sydney Evans also shared her tips for staying safe and reducing stress during the pandemic.
The panel on emerging treatments shared insights into newly approved lupus nephritis therapies, as well as potential therapies currently in clinical trials including AstraZeneca’s anifrolumab, which aims to treat moderate to severe SLE, and is under regulatory review in the United States, as well as in Europe and Japan. AstraZeneca’s Dr. Rachele Berria shared pooled data from all three clinical trials of anifrolumab with three key findings: fast reduction in skin disease, marked improvement in multiple organs, and a reduction in lupus flares – achieved simultaneously with a reduction of oral corticoid steroids.
Lupus warrior and advocate Angel Williams also joined the panel to share what the progress in lupus treatments means to her. Angel even joined the panel from her hospital bed as she recovered from a recent lupus flare – showing the importance of the work being done and the strength of lupus warriors!
During the panel on ensuring access to new and existing treatments, Dr. Sam Lim of Emory University presented data from the Georgians Organized Against Lupus (GOAL) cohort. The findings showed that profound disability caused by lupus greatly affects the type of health insurance coverage people with lupus are able to access, and even highlighted the psychosocial stress of lupus.
Panel sessions wrapped up with a session on how people with lupus make a difference in advocacy, with Olga Lucia Torres, an attorney, author, speaker and lupus warrior; and Addie Winans and her mom Sarah – Addie was diagnosed with lupus at eight years old. Olga and Addie shared how they raise lupus awareness and advocate to help end lupus, including how Addie prepares for her meetings with members of Congress and grabs their attention.
Check out What Attendees Had to Say
Wondering what all the buzz was about during the Digital Lupus Advocacy Summit? Check out what a few attendees had to say:
- Watching these panels is so inspiring! This is my first year advocating. It’s so easy to feel like you have to be super involved in politics or government to have a voice and that’s simply not true. You just need a voice and passion, which we all have! – Sarah B.
- I didn’t know much about lupus, which is why I wanted to attend this summit. I have learned so much and have heard from some incredible advocates and inspiring lupus warriors that have really opened my eyes to this disease. This has been an amazing experience!! – Lauren G.
- The summit was Awesome & very informative. I’m happy I joined and participated in something that others are able to relate to & tell their experiences. It’s a relief. Many don’t know what we’re going through & how we’re feeling. We look good on the outside yet it’s a total different feel on the inside, and it’s not good. – Altavise K.
- Each session has been very informative and relatable. Glad I am attending! – Kristi R.
- Excellent workshop on lupus and COVID19…thanks to all the physicians and specialists, and Sydney thanks for sharing. – Jennifer H.
- I just wanted to say how grateful I am for how organized and informative this summit is. I appreciate being able to participate from my home and still feel connected to this great group of advocates. – Rebecca B.
- Wow!!! I learned so much in these 2 days – Mari G.
In this summary, we’ve only touched on a few of the panels and highlights from the event, so if you missed the 2021 Digital Lupus Advocacy Summit, there’s still time to take in all of the incredible and inspiring information! Log-in to lupus.vfairs.com today, and click on the auditorium then the screen to watch the recordings until April 2.
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