Author: Amanda Vassall (Sick Cells)
Meet Cory Lewis —A Sick Cells Ambassador, community-driven go-getter and an energetic and positive influence among his peers.
To be an Ambassador, all you need is a passion for helping people with sickle cell disease and the willingness to make your voice heard. Ambassadors represent a variety of stakeholders, including patients, caregivers, and siblings, who have experience in all different areas of advocacy.
When Cory Lewis enters a room, he brings a positive and contagious energy that can’t be shaken. The 26-year old resides in Atlanta and attends Georgia Military College as a biology major. Cory lives with sickle cell disease, hgb SC.
Although Cory has lived with sickle cell his whole life, he didn’t consider himself very active in the community until he turned 23. Growing up, Cory faced complications from SCD that led him to being in the hospital for weeks to months. “Teachers would tell me to just drop out and come back the next year because I missed so much school,” said Cory.
After moving from Florida to the Northeast, the difference in weather played a role in the increase in crises Cory had in high school. To make matters more complicated, the trip to his doctor was nearly an hour away from home. “I once found myself in the hospital for two months, I developed acute chest syndrome. I didn’t understand why this was happening to me, then to remember others who deal with the same struggle,” said Cory. “During that time, and even a little bit before, I started thinking about building my organization. I made a Facebook page and used it as a diary for myself.”
Cory started RedMoon Project, Inc. to restore health, elevate lifestyle and develop awareness in the SCD community. He’s especially focused on pushing education initiatives, and works with local schools to share knowledge about SCD with children — something he wishes he had more of growing up. “I don’t want these kids to think all they have is a hospital and a nurse,” said Cory. “I went to the Cayenne Wellness Center SCD Seminar and I met these younger children who were so knowledgeable about SCD. Imagine if more people — kids and adults — were equipped with information like this.”
In the future, Cory sees RedMoon Project reaching children across the nation. That way, they can learn about SCD at a young age and advocate for themselves, their siblings and even friends.
While Cory says he’s been seriously involved with the community for just three years, he’s accomplished so much in that amount of time. Just this year, Cory participated in Bluebird Bio’s, “Spark Sickle Cell Change,” initiative. He later worked with Sick Cells as a community engagement intern. During that time, Cory presented at a policy round-table during Rare Disease Week in Washington, DC. “One of my favorite parts about advocacy is getting my points across and making sure people understand,” said Cory. “It’s rewarding to join a task force and get things done in my community. It’s a chance to grow and learn from feedback to better my advocacy work. Not only does it give me a boost in confidence, but it motivates me to do more.”
As for the future, Cory hopes that the light that’s shining on the SCD community gets brighter and drives more positive change. But to keep moving forward, he’s a strong believer in strength in numbers. “We are stronger together and we can make more happen when everyone works together. We’re all preaching the same message, now let’s do it as one,” he said.
