Sick Cells and Avalere Health want to thank our Dialogue attendees for sharing so many interesting ideas which helped us create a Roadmap on how to advance care for individuals with SCD.

Read the Roadmap

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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Faces of SCD Blog Series: Finding Your Routine with Marissa Cors

Sick Cells sat down with Marissa Cors, a California native living with sickle cell Hgb SS, to discuss how she’s managed SCD for the last several decades.

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A Community of Unique Individuals Needs Options

This year, Sick Cells is celebrating Black History Month with its #YourBlackHistory series which aims to highlight the voices of Black sickle cell warriors, caregivers and advocates who are making history today through their advocacy work, commitment to service, and devotion to improving the lives of those in the community.

As part of the series, we’re spotlighting Mapillar Dahn — president and founder of MTS Sickle Cell Foundation, Inc. and the mother of three children who live with sickle cell — and her perspective on the sickle cell disease community’s unique needs.

 

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Your Black History Month

The goal of Your Black History Month is to amplify the voices of Black sickle cell warriors, caregivers and advocates who are making history, today, through their advocacy work, commitment to service and devotion to improving the lives of those in the community. Throughout the month of February, Sick Cells will highlight five SCD advocates and their unique stories. #YourBlackHistoryMonth

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Complementary Therapies #3: Q&A with a Music Therapist

This month, as we continue our series on complementary therapies, Sick Cells spoke with Sam Rodgers-Melnick, MT-BC, a music therapist and clinical researcher at University Hospitals Connor Integrative Health Network in Cleveland, OH.

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Complementary Therapies #2: The Impacts of Music Therapy on a Sickle Cell Warrior

Sick Cells interviews Brittany Butts about her experience with the Missouri-based program Kids Rock Cancer

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Complementary Therapies #1: Meeting a Music Therapist

Sick Cells interviews music therapist, Tracie Sandheinrich, about her experience working with adolescent sickle cell patients

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After a Meeting at the White House

There’s still work to do in the sickle cell community. After visiting the White House for a historic roundtable, Ashley Valentine writes about her experience and what’s to come.

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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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