#BoldLipsForSickleCell attends the Sickle Cell Community Consortium Leadership Summit

Posted in: General News, Sickle Cell Disease

This past March The Sickle Cell Comunity Consortium held it’s very first General Assembly of Community Based Organizations at their Leadership Summit in Atlanta, Georgia. Various organizations, such as Sickle Cell 101, Kids Conquering Sickle Cell and Sickle Cell Natural Wellness Group came together to collectively plan the best ways to address and tackle the important issues in the sickle cell community. It was a three-day event that afforded us the opportunity to learn vital things that will help us continue to run our organizations effectively. Topics covered included Gene Therapy as it relates to Sickle Cell, Patients rights in regards to school and the work, known effective ways to raise funds and how to use technology correctly to better your organization. Founder and CFO, Jew-El Darbone did a presentation on how to successfully use social media as a way to engage with supporters of your organization. She knows so much about that topic and it shows with how well she manages our social media accounts. While there we recorded the docu-feature “Males Living With Sickle Cell” that featured the men of The Sickle Cell Champions Association, Sickle Cell Natural Wellness Group, Kids Conquering Sickle Cell and Patient Advocates Kadeem Gayle and Tynisha Hall. In the video, these men spoke on all the issues men face while dealing with this illness. Our founders were there to give a woman’s point of view. It was very in depth and raw! To check it out click the following link: https://www.youtube.com/watch?v=wW_rhhLCEsU. This event proved to be another successful event that we are so honored to be apart of.

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