Purpose:
The Sickle Cell Disease Association of America, Inc. (SCDAA) served for over ten years through four grant cycles as the National Coordinating and Evaluation Center (NCEC) (SCDAA-NCEC) for Health Resources and Services Administration (HRSA) Newborn Screening Follow-up Program. The program was comprised of 17 grantees located in NY (2), AL, GA, NC (2), IL, TN, AR, FL (2), MO, PA (2), OH, and CA (2). Eight of the 17 grantees were CBO and SCDAA member organizations that included: Sickle Cell Disease Association of America-Mobile Chapter, Sickle Cell Disease Association of Illinois, Sickle Cell Disease Association of America, Inc. – Eastern NC, Sickle Cell Foundation of Georgia, Inc., Sickle Cell Disease Foundation of California, Piedmont Health Services and Sickle Cell Agency, Sickle Cell Disease Association of America – Philadelphia and Sickle Cell Foundation of Palm Beach County, Inc. All other grantees were considered affiliates of SCDAA. These grantees partnered with state newborn screening programs, comprehensive SCD treatment centers, and health care professionals to provide support to infants screened positive for SCD, SCT and their families.
Program Goal:
The goal of this program is to ensure that individuals diagnosed with sickle cell disease receive appropriate follow-up services including counseling, education, access to a medical home, and other support services by supporting grantees and CBOs focused on SCD.
Program Objectives:
Through their projects, the grantees worked cooperatively with the SCDAA-NCEC to implement model programs of newborn screening follow-up. The SCDAA-NCEC implemented, managed and accomplished work on five major project areas: 1) Educational Material Development and Dissemination, 2) Data Development, Expansion, Use and Evaluation, 3) Strengthening Carrier Status Follow-up with State Newborn Screening Programs and the Association of Maternal and Child Health Programs (AMCHP), 4) Partnership Development and Enhancement and 5) Information Exchange with Grantees.
Project Sub-Awardees 2016-2017
Alabama
Central Alabama Chapter of the Sickle Cell Foundation
Mission: To enhance the quality of life of individuals and families affected by sickle cell disease through education, advocacy, and support.
Sickle Cell Foundation Greater Montgomery
Mission: It is our mission to improve the lives of those suffering with the disease, while working closely with individuals and agencies conducting research.
California
Cayenne Wellness Center
Mission: To improve the nutritional and mental health of the public. We achieve this mission through education, research, and public awareness initiatives and community outreach programs that promote good nutrition and mental health.
Sickle Cell Foundation of California
Mission: To provide education and life-enhancing programs and services to individuals with sickle cell disease, to broaden publicawareness about sickle cell disease andto promote medical research and educationto ultimately find a cure.
Delaware
Tova Community Health, Inc.
Mission: TOVA Healthcare in association with TOVA Community Health aims to build capacity for research, awareness and access to quality care for persons living with a chronic medical condition(s) like Sickle Cell Disease. Our mission is to provide comprehensive holistic compassionate care services to achieve optimal health outcomes.
Georgia
Sickle Cell Foundation of Georgia
Mission: To engage, educate, and energize the community to improve the quality of life for people affected by sickle cell disease.
Illinois
Sickle Cell Disease Association of Illinois
Mission: Sickle Cell Disease Association of Illinois’ (SCDAI) primary mission is to enhance the quality of life for people with sickle cell disease and their families. To effectively achieve this goal, SCDAI acts as an advocate for improved healthcare and services for sickle cell patients by educating and informing the community through outreach programs.
Indiana
Martin Center – Sickle Cell Initiative
Mission: To aid and enhance the lives of those affected by Sickle Cell and associated disorders by providing client services, patient and family advocacy, and education.
Maryland
Maryland Sickle Cell Disease Association, Inc.
Mission: To improve the quality of life for those affected by sickle cell disease by promoting advocacy, education, research and excellent healthcare delivery.
Michigan
Sickle Cell Disease Association of America, Michigan Chapter, Inc.
Mission: To maximize the quality of life of individuals living with sickle cell disease. To enable individuals with sickle cell trait to make informed decisions with respect to family planning. To provide education and testing for the general public.
Missouri
St. Louis Sickle Cell Association
Mission: The Sickle Cell Association is a not-for-profit organization that strives to diminish suffering and improve the quality of life for those individuals affected by sickle cell disease. We are committed to raising the public’s awareness and providing education to patients, their families, health professionals, legislators and the general public about sickle cell disease, its management and its challenges.
Nevada
Alliance for Childhood Disease dba Children’s Specialty Center of Nevada
Mission: To advance cures and means of prevention for pediatric catastrophic diseases through research and treatment, while providing access to quality medical care for the uninsured, under insured, and medically indigent children of Nevada with complex medical issues; through a charity care plan, education, research, and advocacy. Consistent with the vision of our founders, that no child be deprived of care based on a family’s inability to pay for services.
New Jersey
Sickle Cell Association of New Jersey
Mission: In concordance with the mission of the Sickle Cell Disease Association of America “to advocate for and enhance our membership’s ability to improve the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions, while promoting the search for a cure for all people in the world with sickle cell disease.” SCANJ is here to help, educate, and advocate in the fight against sickle cell disease.
New York
Queens Sickle Cell Advocacy Network (QSCAN)
Mission: A deep sense of commitment; it focuses on those with Sickle Cell conditions. We provide a clear sense of direction for families and individuals, enabling them to actively participate in their communities and health care needs.
The Sickle Cell Thalassemia Network
Mission: To improve the quality of life for individuals and families living with sickle cell disease, thalassemia and other hemoglobin disorders through education, advocacy and support interactions. To create a community where we can share our experiences as a collective to improve and impact the education an awareness of sickle cell disease, thalassemia and other hemoglobin disorders.
North Carolina
Piedmont Health Services and Sickle Cell Agency
Mission: To provide outreach, education, screening and case management for people with high-risk health problems.
Community Health Interventions & Sickle Cell Agency, Inc.
Mission: Community Health Interventions and Sickle Cell Agency, Inc., is dedicated to addressing various health related challenges that significantly affect our community’s health and wellness. In conjunction with our health and human service initiatives, CHI will provide education, prevention, and implement & support documented best practices for interventions, services, and treatment in our efforts to eliminate health disparities.
Ohio
Ohio Sickle Cell and Health Association
Mission: To provide Education, Advocacy and Support to persons and families affected and at-risk for Sickle Cell Disease through effective approaches to Sickle Cell Services.
Oregon
Sickle Cell Anemia Foundation of Oregon
Mission: To promote awareness of the genetic causes and health effects of sickle cell anemia and related conditions, and to provide leadership aimed at improving the quality of life for people who suffer from this terrible but treatable disease.
Pennsylvania
Children’s Sickle Cell Foundation
Mission: To provide social, educational, and economic support for children with sickle cell disease and their families.
Sickle Cell Disease Association of America Philadelphia Delaware Valley Chapter
Mission: To serve as a vehicle and resource center for the psychosocial and social service needs of children, adolescents, adults and families affected by sickle cell disease. SCDAA/PDVC seeks to develop, manage and allocate resources in partnership with hospitals, charitable organizations community based organizations and social service agencies.
South Central PA Sickle Cell Council
Mission: To partner with the health community to provide support to clients, families and caregivers affected by Sickle Cell Disease and Trait, in 26 PA Counties, through advocacy, public awareness, intervention and education.
South Carolina
James R. Clark Memorial Sickle Cell Foundation
Mission:To optimize the social, psychological, and physiological well-being of individuals with sickle cell disease and to decrease the incidence of sickle cell disease through genetic screening, counseling, and education.
Tennessee
The Sickle Cell Foundation of Tennessee
Mission: To provide educational awareness, comprehensive social services, and collective supportive impact to all persons affected by Sickle Cell Disease within our service areas.
Virginia
Sickle Cell Association, Inc.
Mission: To assist the sickle cell community, especially families with non-medical needs such as support groups, transition, education, access to research, resource sharing, family follow-up; advocacy on the local, state and national levels. Programs and services are designed to improve the quality of life for individuals living with this debilitating disease.