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The Sick Cells Blog

Welcome to the Sick Cells blog! This is our online forum for discussing and sharing key information
about sickle cell disease and community activities.

Through this forum, you’ll hear from Sick Cells’ staff, board members and external partners,
and of course SCD community members.

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Why We’re Voting This Year

Sick Cells took the time to speak with Jeffrey Zuttah and Terri Booker, Esq. Jeffrey is a sickle cell patient advocate and business professional who’s passionate about propelling the community forward at the local and national levels. Terri is a sickle cell advocate and lawyer working as a civil servant to her community of Philadelphia. As votes continue to pour in ahead of Election Day (Tuesday, November 3), they shared why they choose to vote.

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The Power of Staying Informed

After a December 2019 article on the cost of the two most recent sickle cell disease (SCD) treatments was highly criticized by members of the community, it became clear that knowledge on the disease, its types, and complications was disparate.

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SCD Treatments

A collection of information about the FDA approved sickle cell treatments Endari™, Oxbryta™ and Adakveo®.

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Donate Blood, Save a Life

The Valentine family is hosting a blood drive in Lisle, IL on Saturday — Marqus’ birthday. The donations will go to Marqus’ home hospital, where he received many blood transfusions. Many patients with sickle cell disease (SCD) rely on blood transfusions for treatment.

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IMPACT OF DONATING: SUPPORTING A STORY OF HOPE

The future could bring a world that fights to make sure people living with sickle cell, their parents, and their loved ones are told the story they deserve: a story of hope.

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Racism in Sickle Cell: Why Black Lives in the Healthcare System Are Forgotten

This month’s blog post is written in honor of Marqus Valentine, Co-Founder of Sick Cells, and it is with a heavy heart that we share the news of his passing. Marqus was a truly passionate and dedicated advocate for the sickle cell community who fought tirelessly to raise awareness of the realities of living with SCD. Though we are heartbroken by the loss of our fiercest warrior, we are dedicated to continue working with you all to fight medical injustice and improve the lives of those affected by SCD for generations to come.

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Sick Cells Ambassador Spotlight: Cory Lewis

Meet Cory Lewis —A Sick Cells Ambassador, community-driven go-getter and an energetic and positive influence among his peers.

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Sick Cells Ambassador Spotlight: Terrance Hill

Meet Terrance Hill —A Sick Cells Ambassador, passionate policy-transformer and a diligent community member and friend.

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Impact of the COVID-19 Pandemic on Sickle Cell Disease Management

Sickle cell disease (SCD) is a severe red blood cell disorder that disproportionately affects African American and Hispanic populations. In the United States, there are approximately 100,000 individuals living with SCD (although there is a lack of accurate reporting and the exact number is unknown). Avalere Health and Sick Cells have partnered to examine how SCD is being managed during the COVID-19 Pandemic.

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