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When LA Lupus Lady Got Her Joanne Vibe Back

As a person who lives with lupus and is known as “LA Lupus Lady,” I constantly strive to raise awareness for lupus.

When I first saw the Lady Gaga performance of JOANNE at the “Learn From Lupus” virtual fundraising event supporting the Lupus Research Alliance on November 23rd, I couldn’t help but smile as I felt warmth in my heart for the first time in months. 2020 has been an unprecedented year for all of us filled with a global pandemic and lockdowns, plus the Las Vegas shows and the Chromatica Ball were canceled. Personally, my physical health was challenging, my marriage of more than fifteen years ended, and my older brother died of complications related to the virus. But 2020 is also the year Lady Gaga helped me find my groove with Chromatica’s “Free Woman,” while Maya Smith and the Born This Way Foundation staff nudged me to rediscover my passion for channeling kindness, finding anchors, and supporting lupus awareness.

I am impacted by lupus, and I am fanatic about sharing the importance of lupus research and funding the scientists who are developing innovative new treatments and discovering how and why lupus impacts individuals differently–that key is vital in finding a cure for this complex autoimmune disease. By Lady Gaga sharing why she and her family support the Lupus Research Alliance on November 23rd, she did more for Lupus Research Alliance and lupus awareness in a few minutes than I can do in years of advocacy.

Earlier this year, Born This Way Foundation donated hundreds of “Joanne” backpacks to the Los Angeles “Walk with Us to Cure Lupus,” but as the pandemic grew and Lupus Walks across the country were canceled, the Lupus Research Alliance pivoted and held “ManyOne Can,” an online community fundraising event in September and the “Joanne” backpacks were given to the top national fundraisers.

One of my favorite lupus organizations is the Lupus Research Alliance: they are different from other nonprofit organizations in that their Board of Directors fund all operating and administrative costs so that 100% of fundraising contributions directly support lupus research.

The kindness that Maya Smith, Executive Director of BTWF demonstrated in a tweet earlier this year (long before lockdown and mask mandates) started the process. She simply asked if anyone knew of Southern California organizations that could benefit from some donations. I did, and a week later, I was heading into a huge warehouse south of LAX to pick up “Joanne” backpacks for the Lupus Research Alliance. I was grinning as I loaded those boxes filled into my car. Lady Gaga’s JOANNE was playing on the drive home, and I thought about the incredible joy that these backpacks were going to bring to lupus warriors,  and I thought about the kindness of the entire Born This Way team lead by Maya and BTWF co-founder Cynthia.

Soon the tears began. I hoped that somewhere Joanne knew about that her life and legacy are helping people find joy. Joanne was (and still is) a daughter, a sister, an artist, and a lupus warrior . . . whose story will never be forgotten. Thanks to a generous gift from Born This Way Foundation, I was able to help the Lupus Research Alliance “channel kindness” and spread love to many lupus warriors. This was when I thought only the Los Angeles Lupus community would benefit from the kindness of the Born This Way Foundation.

If Lady Gaga’s tribute performance of Joanne is not reason enough to donate and support the Lupus Research Alliance – your donation can be the one that makes a difference, think of it as a gift to all lupus warriors or as a tribute to Lady Gaga’s Aunt Joanne. To learn more about the work of the Lupus Research Alliance, explore and donate via LupusResearch.org your contribution of any amount truly matters.

Inspired by Lady Gaga, I hope to make an impact on the lupus community by shining a positive light on lupus patients through “With Flair” a HealtheVoices Impact Fund project funded by the Community Foundation of New Jersey, I am one of the 2020 grant recipients, and my goal is to use Twitter and Instagram to share stories of individuals who are living and thriving with lupus. If you are someone or know someone who is living with lupus and finding the flair, please reach out to me at @LAlupusLady or on Instagram as @msamandagreene so you can become a part of the “With Flair” project.

 

Amanda Greene

Amanda Greene is actively involved in healthcare advocacy, she lives with systemic lupus, fibromyalgia and other chronic autoimmune diseases. She writes for “The Mighty” and contributes her perspective to health websites. Recently announced as a 2020 HealtheVoices Impact Fund recipient. In 2020, Amanda shared “How Twitter can connect communities.” at the Super HealtheVoices conference in April. She shared her perspective on virtual reality for people with chronic pain at the Virtual Medicine online event this Fall. In 2019, the Lupus Research Alliance honored Amanda as a “Lupus Luminary.” Connect with Amanda on Twitter at @LAlupusLady or on Instagram as @msamandagreene.

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