National Sickle Cell Awareness Month

September is National Sickle Cell Awareness Month to raise awareness about the devastation of sickle cell disease and prompt action that will drive improved quality of life for those affected. The disease impacts people of all races, though Blacks are at the top of the list. Blood donation from the Black community is in short supply. Please contact your local blood bank and give today!

In Memory of Hertz Nazaire

Jacquie Robinson and Hertz Nazaire

“SCACURE Networks is greatly saddened by the loss of another phenomenal warrior in the SCD community – Hertz Nazaire. He was a personal friend in the Sickle Cell community whom I enjoyed a conversation with about his art and his passion for bringing greater awareness to the cause. We will all miss him dearly, but rejoice that he is no longer in pain, nor suffering, and surely has a brush in his hand watching over us from above! Our hearts go out to his family and closest friends. He will forever be remembered for his contributions were too numerous to count.”

Jacquie Robinson, SCD Advocate & Educator, Founder/Leader SCACURE Networks

Gant-Johnson Legacy: We are all better educated, more engaged, and truly empowered to make a difference!

Karen D. Gant-Johnson started her sickle cell journey, January 5, 1990 at the Martin Center Sickle Cell Center under the leadership of then Executive Director, Mr. Robert Treadwell, as a data entry clerk entering all sickle cell disease and trait client information into the new database. After 4 years at the company, she was promoted to Assistant to the Executive Director providing administrative and bookkeeping support for the Center.

In 1998, under the new Executive Director, Susie Davie, Karen was asked to oversee the Client Support Department as the Client Support Manager, a liaison role to the Center’s clientele, providing case management plans for each family affected by Sickle Cell Disease. In this role, she was also responsible for ensuring client satisfaction, organizational effectiveness, program development, and constituent growth according to the strategic plan.

 Around 2011, under the new leadership of the Martin Center, President and CEO Gary Gibson, Karen transitioned to the role of Sickle Cell Program Director. This entailed a wide range of duties related to Sickle Cell Disease, Trait, and associated blood disorders’ education. She supervised other staff members to ensure training and education to caregivers, educators, health care providers, and communities in designated geographic areas, paying attention to those communities at highest risk. She also educated persons and their family members with Sickle Cell Disease, Trait, and associated disorders in accordance with disease management programs.  

 In 2012 Karen’s tenure at the Martin Center ended and SCACURE Networks, Inc. was very fortunate that her love for this work prompted her to join our team. Karen was instrumental in the organizational launch and served as the Client Services Director. In this time, she was responsible for the Newborn Screening Follow-up program, including data collection, mailings, primary care providers education, client education and advocacy, and regional education in the southern counties of Indiana.

 October 31, 2019 Karen elected to retire. In nearly 30 years, she built quite the legacy of service, support, and friendship with patients and families, medical providers and other non-profit organizations and educators, government organizations and the general community. Karen’s passion, compassion, knowledge and wisdom were gifts to all whom she met; even her well-coordinated attire brought joy and smiles! Karen Gant-Johnson will be deeply missed on the front lines of our network. All she touched is now better educated, more engaged, and truly empowered to make a difference in the lives of those afflicted by Sickle Cell disease. With a heartfelt thank you and a bear hug, on behalf of SCACURE, I wish you all the best in your retirement Karen; you’re welcome to join us at “network” events any time!

In high regard & respect,

Jacquelyn Robinson

Founder, Advocate, & Educator