You guys, you have to watch this video. This is 22-year old student Kristyl J. L. Smith, performing spoken word about the challenges she has faced living with sickle cell disease and how she has met and overcome those challenges.
She is talented, beautiful, and rooted in a real, raw, and relentless faith. Her poem is worth a watch.
Sickle Cell research is largely under-funded. This month, the Sickle Cell Disease Association of America announced the formation of the Sickle Cell Disease Congressional Caucus. This legislative milestone is designed to focus on increasing support for the largely under-funded disease. The bi-partisan Caucus will work toward bringing public and congressional awareness to the unique needs of the Sickle Cell community – patients, physicians, scientists and industry, and to develop opportunities to address barriers in access to and development of crucial treatments.
I’m happy to say that when I reached out to Bruce Braley, who as you know played a pivotal role in Joseph’s adoption, he joined the caucus just one day later. Please consider shooting a quick e-mail to your member of congress informing them of the SCD Congressional Congress to support laws that accelerate treatments and a cure for sickle cell disease, and expand funding for research.