SICKLE CELL ANEMIA FOUNDATION OF OREGON INC
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Mission Statement
The mission of the Sickle Cell Anemia Foundation of Oregon (SCAFO) is to improve the quality of life of those suffering with sickle cell disorders and to inform and educate the general population. Our goal is to promote awareness of the genetic causes and health effects of sickle cell anemia and related conditions; to promote improved access to care through increasing the number of sickle cell educated clinicians; and to remove the stigma that sickle cell clients are drug seekers which impede the ability to provide sensitive and quality care. The vision of SCAFO is to build a solid statewide foundation for providing a responsive presence for families facing sickle cell disease.
About This Cause
The Sickle Cell Anemia Foundation of Oregon is a 501(c)(3) non-profit organization dedicated to educating vulnerable populations and to encourage testing for the presence of this painful and life-threatening, but treatable disease. Our immediate objective is to identify all the patients and carriers of sickle cell disease living in Alaska, Idaho, Oregon, and Washington state. We are dedicated to assessing the health care needs of these patients and helping them by facilitating regular access to appropriate health care providers and services. Our Pacific Northwest outreach program aims to provide individuals with the information they need to be tested for the presence of sickle cell disease. Diagnosed patients are encouraged to sign up with the national “Get Connected” Sickle Cell Anemia registry. The foundation helps patients with: Patient advocacy Access to support groups Parent education Genetic counseling and referrals for free diagnostic testing Ongoing education about SCD and about available treatments Limited funds for home heating during winter months Moral support Sickle Cell Disease (SCD) is an inherited blood disorder that affects over 100,000 Americans — and millions worldwide. SCD is often identified with the African Americans, but it also frequents people of South Asian, Middle Eastern, Hispanic, and Mediterranean descent. According to the CDC, approximately 1% of children with SDC will die within the first 3 years of life — often from stroke and without warning. Some two million Americans are carriers of the sickle cell gene. History/Purpose The Sickle Cell Anemia Foundation of Oregon, Inc. was founded by Pastor Marcia Taylor in 1985 in order to advance treatment protocols, life expectancy, quality of life, and medical advocacy of patients and families with Sickle Cell Disease. Due to a deep conviction that the lives of sickle cell patients could be improved and even saved, Pastor Taylor set out on a personal journey of advocacy, education, and community outreach for the Sickle Cell Disease community of medical staff, families, and patients. SCAFO is the first community based organization in the Pacific Northwest created to address the needs of sickle cell clients and their families. Pastor Taylor started her work in serving people affected by Sickle Cell Disease in 1981 in honor of her late daughter, Ramona, who passed away due to sickle cell complications. Because of her work, Oregon began testing newborns for sickle cell trait and disease. Her work reaches into Washington, Alaska, and Idaho. Our greatest honor is to be called to serve for nearly 40 years in the very location that patients like Ramona are in greatest need, the hospital wards and emergency rooms, ensuring that patients receive fair, rapid, and appropriate treatment. Ramona’s spirit resides in every measure of the work we do and our unwavering commitment to improve the quality of life of those who live with sickle cell challenges daily. The Sickle Cell Foundation of Oregon programs educates the community via workshops and dissemination of sickle cell educational materials, radio, television, newsletters, and social media, provides focus groups, and helps with personal medical protocols. Our programs are specifically designed and dedicated to accommodating the needs of those who are faced with the challenges of Sickle Cell such as access to care, socio-economical support services, mental health, substance abuse, family and/or care provider educational support, and isolation. Needs Sickle Cell disease patients and their families have a range of needs as a result of their health condition, and the racism, health inequities, and other obstacles they experience in the larger community. Common needs of families include: basic needs and concrete/financial support services; housing and energy assistance; advocacy to navigate, access, and improve health services; follow-up health care; access to sickle cell treatments; peer support and community connections; mental health counseling and holistic wellness services; service coordination; culturally specific support and connections; burial assistance; school supplies and laptops for youth; telehealth support and training; and domestic violence advocacy and services SCAFO provides culturally specific services to Black individuals/families and people from other cultural and ethnic groups who are affected by sickle cell disease. Advocacy is an important aspect of our work because of the history of underfunding and lack of research in addressing this most prevalent genetic blood disorder- mostly due to the fact that it predominantly affects people of African descent. In addition to providing individualized support to families, we focus on issues that affect the quality of life of those affected by SCD- genetic screening awareness and access, environmental conditions that exacerbate sickle cell crises, and racism and bias in the health care delivery system that affects the quality of care for sickle cell patients. The sickle cell support community has always been a grass roots initiative, building on the strength and faith of “Sickle Cell Warriors” to support one another and advocate as a group whose condition is often misunderstood and dismissed in the health care system. SCAFO continues to promote that tradition. SCAFO’s Program Entails Five Elements: 1. Community Education and Capacity Building- Providing educational and skill building experiences that bring community members and health care providers together for shared learning; Building individual and organizational capacity to obtain and deliver beneficial treatment and supports to people affected by sickle cell disease 2. Peer Advocacy and Navigation Services- Providing people with lived experience the opportunity to engage in meaningful work in advocating on behalf of other families affected by sickle cell disease, supporting families in navigating the service delivery system, and coaching families in self-advocacy 3. Holistic Counseling Education and Case Management Services- Providing families with ongoing emotional and concrete support services, service coordination, and holistic wellness services to improve the quality of life for families 4. Health Care Provider Education and Capacity Building- Providing collaborative education and capacity building experiences designed to: impart clinical practice strategies; reduce bias; promote holistic patient support; and build support networks for providers and families- education sessions to include evidence-based practice strategies, family and staff panel discussions, and networking 5. Culturally Specific and Comprehensive Advocacy and Support Services- Creation and delivery of a culturally specific, comprehensive, and accessible range of advocacy and support services that meet the needs of families affected by sickle cell disease; Therapeutic Martial Arts for clients returning home from hospitalizations to improve and strengthen the lungs and bodies Our current priority initiative areas are: Youth/Family Engagement and Support: summer camp for youth and families; youth driven activities; transition to adult health care; support groups; and mental health services Outreach, Support, and Access: outreach to families of newborns and those newly diagnosed; newborn screening follow up; mobile health van for statewide/rural outreach, screening, and regular follow up care Provider and Community Education: education sessions for healthcare providers- including patient voice; updates on new/emerging treatment Community Awareness: Sickle Cell Awareness month; sickle cell walk; sickle cell dinner; outreach to community organization; public service announcements; legislative advocacy- craft statewide sickle cell steering committee bill Target Outcomes for SCAFO Programs Outcome Area 1- Improved quality of life for people affected by sickle cell disease Outcome Area 2- Increased awareness by families and health care providers of the most current effective treatments and supports for people affected by sickle cell disease Outcome Area 3- Creation and delivery of a culturally specific, comprehensive, and accessible range of advocacy and support services that meets the needs of families affected by sickle cell disease Outcome Area 4- More consistent and holistic responsiveness by the health care and community service communities in attending to the needs of people affected by sickle cell disease and their families