Every day of the year, and not just during National Sickle Cell Awareness Month, Ashley Valentine, co-founder, and president of Sick Cells, celebrates the legacy of her late brother, Marqus Valentine.

    Ashley Valentine, MRes

Marqus passed away in 2020 at the age of 36 from complications of sickle cell disease. Prior to his passing, he co-founded Sick Cells, a nonprofit advocacy organization for people with sickle cell disease and received the 2019 American Red Cross Blood Service Heroes Award, among many other accolades.

Ashley Valentine remembers her older brother as a man with a vision, who "wanted to change hearts and minds through storytelling about the sickle cell disease community." Marqus initially set out to film a documentary chronicling the experiences of people with sickle cell disease.

        Marqus Valentine

As his own illness progressed, however, he and his sister realized they wanted to create a widely accessible and enduring resource and co-founded Sick Cells in 2017. "We promote equity, advocacy, and empowerment" to improve how people with sickle cell disease receive health care, says Valentine.

From Sickle Cell Disease to Seizure Disorder

In 2008, while navigating transitions in his own health care, Marqus started making a documentary about sickle cell disease. Valentine notes that her brother’s illness became more difficult to manage once he switched from a pediatric to adult care team.

2022 PCORI Annual Meeting (October 26-27)

Join us virtually as we explore a variety of topics, including rare diseases and telehealth.

On October 27, Ashley Valentine will deliver a keynote, sharing her experience in the rare disease community as a patient advocate and how it shaped her approach to patient engagement in research and patient community involvement.

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Unfortunately, during that time, he developed a severe seizure disorder as a complication of changes to his treatment plan. While helping Marqus grapple with this new medical issue, Valentine and her family became increasingly aware of stigma associated with adults with sickle cell disease.

Valentine explains that her brother’s care especially suffered during this period because his care was often delivered "based on personal biases rather than clinical history." Over time, Valentine witnessed firsthand that only providers who truly got to know Marqus were able "to figure out creative solutions for his care." It was these and other experiences that inspired Valentine and her brother to create their advocacy organization.

Honoring Her Brother's Vision

Before co-founding Sick Cells, Valentine, who has a master’s degree in research methods, was a health policy researcher in Washington, DC, and observed that "sickle cell disease wasn’t thought of and wasn’t talked about" by most policy makers.

When expansion of Medicaid coverage for the disease heightened awareness, Valentine notes there was still a general lack of knowledge about the hallmarks of sickle cell disease. She recalls one colleague asking her, "What’s the name of that blood disease that’s like hemophilia...sickle cell?".

Fortunately, Valentine has allowed interactions like these to fuel her desire to educate others about sickle cell disease in general and about her brother’s story in particular. She feels that “elevating the voices of the sickle cell community” is crucial for combating stigma. While she acknowledges that it can be challenging to confront bias and “shift people’s perception of patients with sickle cell disease,” Valentine is grateful that she and her brother have created a platform through Sick Cells and “have already witnessed a change” in those their vital organization has touched.

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