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Copyright 2019 Sickle Cycle

scdaa national convention 2017

October 31, 2017

 

The Sickle Cell Disease Association of America (SCDAA) National Convention was held on October 25-28, 2017 in Atlanta, GA. This was my first time attending the convention which made me ask myself why? I thought of many excuses and really all of them amounted to me not being vocal about having sickle cell disease. Would it be too scientific or medically focused? Who really attends the convention? Patients and doctors? Why would it be important for me to be there? All these questions were important to me but if I am honest with myself, I felt that if I attended the convention, I would need to broadcast that I was a patient living with the disease and that idea scared me. Being comfortable in my own skin and fear of the unknown delayed by attendance, but hello 2017 convention.

 

Timing is everything and this year, I have been more open about discussing my experiences with sickle cell. When I received an email about registering for the convention, and later an invitation from the SCDAA to speak on the Lonzie Lee Jones panel, you know I confirmed my attendance with the quickness.

 

I was so excited to go to the convention because it presented an opportunity for me to engage with national leaders in the sickle cell community. The convention exceeded my expectations and was amazing for several reasons but I will highlight my top three: 

 

1. Attendance - The convention had over 650 registrants from all over the country. The registrants included caregivers, patients, advocates, medical physicians, and industry representatives. The diversity of experiences and backgrounds helped shaped the dialogue about sickle cell and created an opportunity to focus on ways that we can work together to bring awareness to the complications of the disease.

 

2. Workshops and research - There were 38 workshops, 66 abstract, 22 posters, keynotes and special presentations including 5 Federal partner updates. The workshops were very informative but I do wish the presentation on medical cannabis was longer. Unfortunately, time ran out before the presenters were able to expand on the use of the alternative practice. 

 

3. Lonzie Lee Jones Panel - I spoke on the panel with an amazing group of people that are living healthy lives with sickle cell disease. The panel displayed the diversity of people with sickle cell who are actors, doctors, politicians, scientists, policymakers, entrepreneurs, etc. I was honored and humbled to be among a panel of talented individuals that have faced many obstacles with the disease but refuse to let the disease define them or their goals. 

 

I left the convention feeling energized and exhausted all at the same time. I met so many people, but I had numerous ideas about how to move forward. If you haven't been to the convention before, I hope you consider attending in 2018. You don't have to have sickle cell disease or work with sickle cell patients to attend the convention. The goal of the convention is to inform and bring more awareness to the disease. The more people that attend, the more information that is shared so your attendance is highly recommended and I look forward to seeing you next year! 

 

With love,

 

Charlotte

 

 

 

 

 

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