Sickle Cell Anemia Awareness San Francisco came into existence in June 2014, a year after my son, Kareem Marcellas Jones (36 years young) passed away from the effects of this vicious disease.
To broaden public awareness about Sickle Cell Disease, advocate for patients and SCD community at large for access to quality compassionate healthcare, empower through education and lastly, establish a Sickle Cell Care & Resource Center in San Francisco.
Our vision is to work collectively with key stakeholders as a united voice to develop positive strategies for improvement in healthcare and create a more comprehensive experience for the patients and their families.
Our objective is to clarify the needs of the people living with sickle cell disease and remove the stigmas and biases. The keys to improvement is trust, communication, compassion and quality care. Further education for clinicians, physicians and healthcare providers would be tremendously helpful. As we strengthen those areas and reinforce the use of effective listening this will build better relationships between people living with sickle cell disease and providers in the ED or Doctors office.
This will also result in fewer cases of the 3Ms:
Misunderstanding, Mistreatment, Misdiagnosis
Currently SCAA provides the following:
Education on SCD & Trait
Internship Program for Youth
Intake/Assessment for Sickle Cell Patients
Peer & Support Group Meetings
Advocacy & Empowerment Program (AEP)
A Sickle Cell Care and Resource Initiative of San Francisco will give SCAASF the opportunity to offer additional services to the patients such as:
Transition from pediatric to adult care
Access to mental health services & health counseling
Access available social programs
Neuropsychological testing for school placement and services
Health care system navigation
Job training and resources
Educational counseling and support
Events & Activities:
Blood Drives - two drives a year
SCAA Fitness Day - collaborating with B-Magic
KMJ Wine n' Sign - Day before walk - make signs
KMJ Warrior Walk - September (Sickle Cell Awareness month)
Advocacy and Empowerment Program (AEP) - Nine-month program
SCAA Support Group - Monthly Meetings
Global Blood Therapeutics
UC Benioff - CA State Action Plan; Sickle Cell Care Coordination Initiative/UCSF Benioff Registry
Western States Sickle Cell Disease Clinical Trials/UC Benioff - Community Advisory Board
Cayenne Wellness - Conducting patient intake/assessments; Advocacy & Empowerment Program
Zuckerberg SF General Hospital - weekly tabling - engage and reach out to patients
UCSF - working with two Hospitalist - to improve care for people living with SCD & data collection
With our efforts and your support we can get the recognition this disease and the patients so desperately need to give them hope for a better quality of life.
"Help us make this disease a disease of the past and not the future."