Some exciting news in the Lupus world is just around the corner!
Although we’re not the same age, both of us were diagnosed with SLE (Systemic Lupus Erythematosus) when we were each 17 years old and this autoimmune disease has very much shaped our lives ever since.
Along the course of both of our health journeys, we have found out that we also have a few other forms of autoimmune and autonomic problems, but Lupus was the beginning for us. It was our first diagnosis and our entry into the chronic illness world. Unfortunately, it seemed to take forever to diagnose (as did most of our other issues) and that in and of itself was upsetting, scary and beyond frustrating. At an age where we wanted to be enjoying high school (and getting excited about college), we were instead in and out of doctors offices, hospitals, and spending most of our time in bed.
Dealing with our Lupus diagnosis at a young age was extremely tough. We tried to keep most of our health problems hidden from our friends and the outside world, which made us feel like we were living a secretive double life. We have grown a lot over the last ten plus years and are now actively part of the chronic/invisible illness community. In fact, our blog was initially started in order to spread awareness of autoimmune illnesses and share our own journeys’ struggles and triumphs. We understand the importance of research, treatment and most importantly a cure of all autoimmune diseases but Lupus research holds a particularly special place in our hearts.
When we came across the Lupus Research Alliance (LRA) we were immediately impressed by their accomplishments. They raise money for Lupus research on a grand scale and are, worldwide, the largest non-profit (non-governmental group) to do so. The purpose of the Lupus Research Alliance is simply to move us towards the most innovative diagnostics and treatments while also moving towards an actual cure. Amazingly, 100% of donations to LRA go towards this goal and that is only possible because the board of directors themselves cover the cost of fundraising. The fact that they care to such a huge extent makes us incredibly grateful and empowers us to do what we can in order to raise awareness as well (in our own small way).
The mission statement of the Lupus Research Alliance actually states that they aim to “free the world of Lupus through the power of science”. This kind of positivity backed by successful action is not only only inspiring, it is potentially life changing for so many.
Of course, raising money towards such a worthy cause doesn’t just happen. There needs to be lots of like minded people working toward the same goal, lots of donors (both large and small), and some pretty amazing fundraising events.
The Lupus Research Alliance hosts an annual fundraiser gala in NYC which always includes a mix of celebrities, athletes, and personalities in the entertainment world. But this year, because of Covid, it will be held virtually and is now accessible to everyone! The LRA will be hosting their Lupus Research 2020 Virtual Fundraising Event this Monday, November 23rd at 7:00 PM EST. This year, the celebrity guests will include Lady Gaga, Selena Gomez, Norm Lewis- with Wille Geist leading the festivities – not too shabby!
The Lupus Research Alliance is aiming to raise 3 million dollars during this event. The registration is FREE, so every member of the Lupus community (and beyond) can stream. Even though we live in Seattle, we can now attend this event from the comfort of our living room and in our pajamas (maybe a 2020 silver lining?). We can’t wait for Monday the 23rd to watch, donate, and celebrate the inspiring activists who are shining such a bright light on lupus research.
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