May 29, 2023

Advocacy

Counseling Resource for Family and Depression
Sickle Cell disease affects the entire family. It is imperative that the family has some type of counseling to manage all the stressors related to sickle cell disease. We want to ensure that persons living with sickle cell disease have a healthy and well structured support system. We will research and help find resources federal and local to ensure the families have the assistance they need. KHF does not directly provide counseling services.

Sickle Cell Health Fairs and Informational Seminars
Know your Sickle Cell Disease Status – There was a National recommendation to screen all infants for Sickle Cell Disease since 1987. However, it wasn’t until about 1980 when all states tested infants for SCD. Those born prior to the mandatory testing may not know if they carry the Sickle Cell gene. Immigrants from the Caribbean, Mexico, and other countries where testing of infants is not mandatory at birth are now here in the US and unaware if they carry and will pass the sickle cell gene to their child.
• Sickle Cell Families have a lot of social and financial burdens and the Kiers Kares Programs can help navigate and ensure they are receiving the federal and local social services they need to manage their lives.

Emergency Assistance Programs
• This program helps provide emergency funding for basic living needs, medical equipment, and transportation for the person affected with Sickle Cell. The families must meet the foundation income requirements for assistance.

Alicia Sickle Cell Sitters
• This program is established to assist working families who have no one to care for their other children while they have to remain in the hospital with their SCD affected child. This program is a network of family members approved to assisting childcare so that parents can continue to work and not have to worry about child care. This program requires registration and approval based on criteria established by the KHF Board of Directors and all participants must go through a background check.