Project SPIRIT Sickle Cell (PSSC), Inc., Recipient

Sickle cell disease is an inherited blood disorder that affects millions of people worldwide. When a person is born with sickle cell disease (SCD), their red blood cells become sickle-shaped, which can block blood flow in the body and lead to various symptoms, including acute and chronic pain, organ damage and even a reduced lifespan. Individuals living with SCD experience painful episodes that may require medication, hospitalization and blood transfusions. And for young people who are already experiencing the ups and downs of life’s transitions, concerns such as moving away from pediatric care to the world of adult healthcare, assuming greater adult responsibilities, and considering major therapies or treatments for their disease can be especially challenging. That is where Project SPIRIT Sickle Cell, Inc. (PSSC) comes in. According to executive director Rev. Dr. R. Lorraine Brown, the organization’s goal is to provide spiritual support to individuals as they experience life with sickle cell disease.Two people in branded T-shirts standing behind a display of imprinted tumblers. “With young people, as they’re going through life transitions, they want to feel normal,” Rev. Brown said. “They don’t want to feel like they don’t have control over their own lives.” How branded promotional items capture attention and spread awareness PSSC, Inc. provides spiritual advising for individuals living with SCD and equips them with resources needed to navigate the challenges or obstacles they may experience. Individuals who reach out to PSSC, Inc. work one-on-one with a chaplain to begin a dialogue based on their needs. The organization aims to help these individuals manage obstacles, such as pain, miscommunication or misunderstandings about their disease, as well as instill confidence and courage to fight every day to live successful lives. Even patients who have undergone curative treatments for their SCD may struggle adapting to a post-sickle cell life, including physical, financial, emotional, societal, psychological and spiritual concerns. The organization also provides other resources, such as virtual meetings, a spiritual support group and a podcast about important spiritual and healthcare topics. “Everyone who is part of the project gets together and leans on each other,” Tisha Valle, program coordinator and navigator, explained. “We’re reaching out nationwide. We have people outside our geographic area from Michigan, Texas and Arkansas, even reaching out to us from Africa.” Because many SCD patients end up needing blood transfusions, the organization makes appearances at health fairs and blood drives. Branded promotional items, such as cotton T-shirts for staff and tumblers for giveaways provided through a one by one® grant, help capture the attention of blood donors and other members of the public. The giveaways provide staff with a chance to educate and bring an often-unheard message and awareness about SCD. “A lot of blood donors wonder, ‘What happens to my blood?’ We show them that here are individuals using what they’re supplying,” Rev. Brown said. “Some people think sickle cell disease no longer exists or has been cured a long time ago. Our program gives us a chance to give people factual information, because, unfortunately, most people know very little about sickle cell.”

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