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Rare with (Headwear) Flair!
Big Accessories Crusher Bucket Hat
- Sizes One Size
About this campaign
Casey + Cassandra are a pair of best friends with the same rare disease called Hermansky-Pudlak Syndrome. In the wake of 2020, the two women created their podcast, Rare with Flair, to share the beauty and normalcy of living their best lives being partially blind and having chronic illness. After two and a half years on air, they’re creating this fundraiser with their beautiful cover artwork on an adorable bucket hat to raise money for the organization for their disease, the Hermansky-Pudlak Syndrome Network. All profits will go directly to the Network and be used to find a cure for the congenital pulmonary fibrosis aspect of the disease. Please consider wearing your support with flair!
In order to go to print, we need to sell 14 bucket hats, so please help us reach our goal! If you're not interested in a hat, you can still donate directly to the Network without purchasing. Thank you so much for helping to fund research!
If we reach our goal, items will ship 12 days after the close of the fundraiser, so expect your hat in April.
Casey + Cassandra have Hermansky-Pudlak Syndrome, an autosomal, genetically recessive mutation of the albinism gene. As such, all those with HPS have albinism, as well as a bleeding disorder. Symptoms of albinism include lack of pigment in the hair, skin, and eyes leading to light sensitivity; Involuntary eye movement; lacking depth perception; and often legal blindness. The bleeding disorder of HPS is characterized by lacking dense bodies in platelets necessary for proper blood clotting, leaving HPSers at risk for easy bruising or bleeding. Certain subtypes of HPS, including Cassandra’s, can be linked to autoimmune conditions like Inflammatory Bowel Disease and pulmonary fibrosis (scarring of lungs). The lung fibrosis has no treatment other than a lung transplant, so we are desperately searching for a cure. HPS affects 1 in every 500,000 to 1 million worldwide.
Side Note: The bucket hat will be embroidered, Custom Ink's Art Team is currently working on updating the design to accurately represent the embroidered version.
Comments
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Supporters
Casey is my granddaughter and I love her very much!
Love sweet Casey!!
Love these hats and this BLOG!!
Great cause with wonderful people and podcast and, well, awesome hat.