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It's been eighteen years, almost nineteen, that I have been living with sickle cell disease. I myself do not have sickle cell, but two out of my four children were diagnosed with this chronic debilitating disease two short weeks after they were born. For those of you who do not know, sickle cell disease is an inherited blood disorder prevalent in individuals who come from parts of the world where malaria is endemic such as countries throughout South America, Africa, Asia, and Europe. Believe it or not, sickle cell disease is not just a "black people's disease" and this is one of many reasons SiCAWRE exists.

SiCAWRE is the brainchild of myself and my daughter Jasmin. For several years now, Jasmin and I have been doing our best to raise awareness about sickle cell disease. Up until three years ago, our audience included members of our church and our classmates. However, back in 2017 Jasmin was invited to participate in the National Institutes of Health (NIH) National Heart, Lung, and Blood Institute (NHLBI) Annual Research Meeting as a guest on their Diversity in Clinical Trials panel. With this being her first time participating in such an event, she was a tad bit nervous. To ease her nerves, I was asked to sit beside her on stage. Little did we know this would be the start of our advocacy work in sickle cell disease.

Jasmin was invited to participate in a panel discussion on diversity in clinical trials.
2017 NHLBI Annual Sickle Cell Disease Clinical Research Meeting

Since Jasmin's 2017 NHLBI invitation, we have talked about doing a sickle cell podcast. For years, that's all we did, talk. Until finally we did something about it; we decided to stop talking and start planning our pilot episode. But before we could share our podcast, we needed a podcast title. After going back and forth with different titles, searching podcast platforms for similar titles (to make sure our title is original), and thinking through the purpose of our podcast, we decided on SiCAWRE.

Our title says it all. SiCAWRE stands for Sickle Cell Awareness through Advocacy, Wellness, Research, and Education. This is also our mission & purpose, to raise awareness about sickle cell by discussing policy & advocacy initiatives, matters relating to health & wellness, current research, and educating others. Although our main focus will be on sickle cell disease, we will discuss other diseases and diagnosis as well. We hope that through SiCAWRE anyone living with a diagnosis of any kind, caretakers and family members included, will be encouraged to not only learn more about their disease, but also how to raise awareness and advocate for what matters most to them and their community.

As you could tell, SiCAWRE is not only a podcast. Jasmin and I want to make sure that we can reach as many people as possible. Some people may never listen to our podcast. While other's may never read our blog post. No worries! We are also on Facebook, Instagram, and Twitter. However, if you made it to the end of this blog post, I hope that you will visit often, listen to our podcast, and follow us on social media. Most of all, we hope that you will share this post with your family & friends.

Until next time, stay healthy and remember, you are your biggest advocate!

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