Sick Cells met with Olivia Sessi—a first-time participant in the annual Sickle Cell Disease (SCD) Policy Forum—to learn about her experience meeting with federal representatives. For Olivia, a first-time advocate, mother, entrepreneur, and caregiver, this is a mission rooted in love, survival, and hope.
Sick Cells sat down with Mariah Jacqueline Scott, MS, MPH–sickle cell warrior and former Sick Cells Research Coordinator–to discuss a newly published research article she contributed to as a part of her doctoral program in Prevention Science at Rutgers University. The study, published by SAGE Publications in the Journal of Medical Education and Curricular Development, explores how medical students are impacted by serving as similar-aged “peer” mentors to young adults with sickle cell disease during the transition from pediatric to adult care.
Sick Cells had the opportunity to sit down with Dennis McCullen to share memories of his friend George Gaddy. This conversation is part of Remembrance Week, a time dedicated to honoring the sickle cell warriors who have passed away and sharing stories to keep their memories alive.
This month, Sick Cells sat down with Kevin Wake to hear about the first Drug Utilization Review Board (DURB) meeting in Kansas to review the newly approved gene therapies, Casgevy (Vertex) and Lyfgenia (bluebird bio) for the treatment of Sickle Cell Disease.
Sick Cells spoke with Rico, an SCD Warrior, founder of CoffeeRun and host of the annual CoffeRun 5k Sickle Cell Awareness Run.
In this blog, Sick Cells worked with the Kidney Cancer Association (KCA) and CJ Johnson Foundation to discuss the connection between Sickle Cell Trait (SCT), exercise, and a rare type of kidney cancer.
In 2022, Sick Cells conducted an analysis of existing state legislation specific to sickle cell disease. We also provide monthly updates on notable state bills. This blog highlights some of the state bills we have been covering and why they are important.
This blog will present the results of our recent project funded by the 2022 PCORI Engagement Award to highlight what matters most to SCD warriors and the community. This blog will also describe the importance of patient-reported outcomes and how they should be incorporated into SCD research.
Mental Health impacts almost every aspect of our lives, as it influences how we think and act. It also affects decision-making processes, how we address stressful situations and how we relate to others. This blog will share stories of warriors and their experience dealing with mental health challenges.
Storytelling is a powerful advocacy tool that provides a platform for the SCD community to express concern over health challenges. This blog shares experiences of sickle cell disease advocates who have previously participated in Hill events, and highlights the immense value of advocacy through storytelling.
It’s February, and we are Feeling the Love at Sick Cells. For us, “Feeling the Love” goes beyond celebrating Valentine’s day. It is also a time to reflect on the love we share with one another. The love we receive from our family, friends, romantic partners, etc., brings comfort and emotional and physical safety; for SCD Warriors, that feeling is unmatched. This month we celebrate the people who continue to pour love into us every chance they get. This blog post highlights several voices from our Faces of SCD Storytelling series that have captured the power of love across the SCD community.
Sick Cells sat down with Eric Kirkwood, sickle cell warrior and advocate, to discuss his experience with chelation therapy and why it’s so important for those in the SCD community.
