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"Rare but Real" was one...

"Rare but Real" was one...

"Rare but Real" was one of the first phrases I heard when Ava was diagnosed with Williams syndrome, because it’s considered a “rare disease”. Today happens to be Rare Disease Day which occurs every year on the last day of February.⁣ ⁣ Ava’s 1 of about 30,000 here in the USA with Williams syndrome — but those with her condition are found all around the world, in all races and cultures. I love that we have friends to visit some day in Brazil, Sweden, Germany, Japan, Saudi Arabia, France, Australia, Mexico…the list goes on and on.⁣ ⁣ Today I launched a new design in Ava’s Store called Rare But Real. I chose the Saguaro Cactus 🌵 for her design, because just like those with rare diseases, they are “rare but real” too! Saguaro Cacti can only be found in the Sonoran Desert, which runs through Arizona (where we live), Mexico and the Baja region of California.⁣ 🌵 ⁣ What’s personally disturbing to me about rare diseases, is because the numbers of those affected with rare diseases is small in comparison to other conditions or disabilities, they don’t get the funding like more commonly diagnosed conditions. ⁣ For example, the @williamssyndrome Association has to fund their own research studies — how crazy is that? If we want to learn more about anesthesia and it’s deadly effects on those with Williams syndrome, we have to finance it ourselves.⁣ ⁣ So for every Rare But Real item that’s purchased within the next 24 hours, I will donate 20% of my profits to the Williams Syndrome Association. Shop @outshinelabels and click Ava’s Store to get 🌵 apparel, coffee mugs, tote bags, stickers - you name it, and help spread awareness for rare diseases. 💗


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