Sickle Cell Advocates & Activism

Hello fabulous warriors!

Okay, everyone here has gotten something from the sickle cell online community in one way or another. Now here is your chance to participate and help others with knowledge the same way you have been helped. Remember, we are the only ones that can change the way the world views sickle cell warriors, and we do this by starting in our circle of influence. Here are a few organizations, surveys and communities that need your input to grow and effectively serve us.

Phyllis Bazen, a Nurse Practitioner from the University of Rochester is seeking those with sickle cell to participate in a research study that focuses on factors of stress that sickle cell patients have. I have already participated in this study…and she just needs 103 candidates, so please, no matter where you are in the US, check out the website; email, call or contact Phyllis to join the study. It doesn’t take long, just 1 hour, and you have the satisfaction of knowing that you helped to improve the sickle cell body of knowledge (also, for completing it, you get $20). Check it out at http://www.scdstresstudy.com/

The SCD Soldier Network is currently recruiting people who would like to help promote advocacy programs for adults with Sickle Cell Disease. Fill out the information card on the “Recruiting Station” page and you will be contacted in order to determine where you fit. Our primary function is to provide assistance whenever a person with SCD feels as though they need help with an issue that has arisen as a result of the disease.

• Employer Conflict Resolution
• In-Patient Conflict Resolution
• Consultation
• Education
• Outreach

You do not have to have the disorder in order to join….Visit http://scdsoldiernetwork.com for more info!

WEGO Health is creating a sickle cell network for sickle cell advocates and warriors to connect, so please head over there and join, start your profile and help grow the community. In addition, for those sickle cell activists (YES, THAT DOES MEAN YOU!), that are interested in joining a focus group related to studying the current trends in sickle cell research, please fill out this survey.

To be featured in next weeks’ edition of Advocacy & Activism, please send me information about your cause, research project, survey or community. Remember, we all must do our part to bring awareness to the populance and end the sickle cell stigma!