Tuesday, January 22, 2019


Each one of us, whether we know it or not, are vocal about it or not, all advocate for something; whether it be domestic violence, bullying, mental health issues, cancer or even animal rights.

There is that one thing we are so passionate about that will make us argue with loved ones or even put people out of our houses over but that's only because we feel so strongly and are desperate to get other people on board with our cause.

Sickle Cell Disease most certainly has its own advocates. Everyone from the patients themselves, the families, caregivers and celebrities who have in one or more ways been affected by this disease are all becoming strong advocates to help find more effective ways to manage the disease as well as funding research for a cure. Some celebrity advocates include T-Boz from the group TLC, (who suffers from the disease herself and is the spokeswoman for the Sickle Cell Disease Association of America), Jordin Sparks (who lost her 16 year old step sister Bryanna to the disease and has set up a GoFundMe page along with her family to raise money for sickle cell research in her honor. See HERE for details). Other celebrities include Laranz Tate who though does not suffer from the disease, founded the Tate Brothers Foundation that focuses on educating people with sickle cell how to avoid iron overload with the "Be Sickle Smart:Ask About Iron" campaign.

I think it's great that these and more celebs are lending their voices and using their resources/platforms to bring the much needed awareness to this disease that kills about 100,000 people every year. More important though are the Advocacy Groups like IMARA that help connect patients and families to information, resources and help they need, see HERE to learn more about them and what they do/offer. Another group is the SICKLE CELL SOCIETY that supports and represents those affected by the disorder, see HERE to get more details and the SICKLE CELL CONSORTIUM that seeks to bring the SC patient to the forefront of all matters regarding health, research, advocacy, education and awareness. See HERE for details and information.

All of these and more collective bodies/individuals serving as sickle cell advocates are helping to shine an even brighter light on the severity of this often fatal disease.

Please share in the comments any other advocacy groups or platforms you know so we can check them out.

Always Love💘

No comments:

Post a Comment