Using The Power of Social Media to Educate People About The Sickle Cell Disease

Meet Cassandra Trimnell, Founder and Executive Director at Sickle Cell 101, a California-based 501(c)(3) non-profit organization that specializes in sickle cell education.

Cassandra’s own struggle with Sickle Cell disease inspired her to try to make it easier for others by educating them about the disease. It is a genetic red blood cell disorder wherein there aren’t enough blood cells to carry oxygen throughout the body and is characterized by excruciating pain. As a result, she founded Sickle Cell 101, a non-profit that turned 7 this year. SC101 uses social media to disseminate education and awareness about Sickle Cell. It all started when she shared the information about Sickle Cell on Instagram. She realized that many people on social media do not know about their genotype or if they have the disease or a trait. SC101 works to fill the knowledge gap and provide as much information to the people. Presently, they are functioning across 115 countries, has 45000+ followers with a reach of 90000+. They talk about the disease through educational posts on social media. They offer easy to comprehend learning material on sickle cell diseases and their traits. 

Trimnell was born in Iowa where she was screened for sickle cell through the Iowa New Born Screening Program. She was diagnosed with the disease at birth, but it couldn’t hold her back. She was determined to support those affected by the disease and is trying to sensitize others in the process. She has a bachelor’s degree in Political, Social, and Economic Global Studies from Sonoma State University. She is doing every bit to help manage the disease and educating the patients and general public. When not working, one can find her volunteering in the sickle cell organizations.  

Talking about the organization, “The SC101 team is consistent with Sickle Cell Educators certified by the Department of Public Health, sickle cell patients and caregivers, and an expert sickle cell and thalassemia physician. SC101 also works closely with some of the top medical physicians and researchers within the field of hematology”. They also partner with community-based organizations, healthcare providers, industry, and other stakeholders within the sickle cell community. As someone who has the disease herself, Cassandra relates to the excruciating pain associated with sickle cell. She is working to make the learning material by asking herself certain questions like what is helpful to her and the information she would like to have access to as a patient. She adds her voice and her thoughts to make the content more patient-centric. It revolves around what should be done to manage the disease. She is working to represent the patient’s voices and to prioritize what information can be meaningful to them. 

As a working mother during the pandemic, Cassandra wears many hats at a time. Currently, she is managing the organization, taking care of her 6-year-old daughter, and also acts as a teacher to her as the schools are closed. She is happy to be able to be there for her daughter during this time, as most of the non-profit work happens online. 

Cassandra deserves hats off for her fight against Sickle Cell and her resolution to educate the masses as much as she can. She is helping the patients with the information that she knows would have helped her manage the disease. Leaving a message for the readers, she says, “Keep going at it. It takes hard work and persistence to get to where you need to be. In this day and age of instant gratification; information and things come quicker than in the past, but there’s no substitute for hard work. You still have to put in the time, effort, and dedication. I hope people are acanthus value in those qualities”.