I am a family member of someone who passed away from sickle cell disease. My cousin passed away when I was in high school in the Caribbean.
I remember when the announcement went out that I had been hired for my position at SCDAA, many people stated that they didn’t know that sickle cell disease still existed or that there was a national organization doing work in that area.
My reason for doing this work is personal and I believe as an African-American woman living in the United States, I have a responsibility to help shed light on sickle cell disease by raising awareness of its devastating and fatal effects on individuals suffering, sometimes, in silence.
I am focused on bringing attention to the need for more legislation, medications and funding for sickle cell disease and the urgent need for people to know their status and get tested for the sickle cell trait. I’ve launched a ‘stigma free’ campaign so that those who have been or feel ostracized by society because of their illness know that there is hope and that there are advocates dedicated to fighting for them locally, nationally and internationally.
For more than 45 years, the Sickle Cell Disease Association of America (SCDAA) and its 45-member organizations and affiliates have worked with partners to advocate for people affected by sickle cell conditions while advancing the search for a universal cure.
Mrs. Francis-Gibson is President/CEO, Sickle Cell Disease Association of America, Inc