Statements
Mission
Breaking The SSickle Cell Cycle Foundation seeks to promote sickle cell disease awareness, education, and prevention through community education and service.
The foundation provides connections to healthcare education, resources and services for those at-risk for and/or affected by sickle cell disease within the community. In addition to providing sickle cell disease education within the community, Breaking The SSickle Cell Cycle Foundation Inc., also seeks to bridge the gap in sickle cell disease education among healthcare professionals unfamiliar with sickle cell disease.
Background
Approximately 100,000 Americans live with sickle cell disease . 1 out of every 365 African-American children are born with SCD each year, making it one of the most common serious genetic disorders in the United States. SCD is a blood disorder of the "sticky cells" where the red blood cells contain an abnormal hemoglobin which causes RBC to become sickle shaped, stiff, fragile and sticky and not able to flow easily through blood vessels. For much of the 20th century, SCD was considered a pediatric condition, as individuals with SCD did not survive into adulthood. However, with medical advancements and improvements in care, most people with SCD are now living into adulthood. Despite these gains, people living with this illness face a lifelong battle with increased risk of pain, anemia, stroke, infection, organ damage and early death.
In 2012, Dr. Lametra Scott's son was born with sickle cell disease type SS, one of the most common and more painful forms of SCD. Dr. Scott initially received misinformation on her son's status; that he was a trait carrier. This misinformation was Dr. Scott's first indication of the lack of education regarding SCD, in the general population, and amongst members of the healthcare profession. Dr. Scott began to research SCD more and as a result found that SCD affects a significant amount of the minority population. In addition to African-Americans, people of Hispanic, Caribbean, Mediterranean, and Indian ethnicities are also impacted. 1 in 13 African-Americans are sickle cell trait carriers and roughly 3 million people in the US are sickle cell trait carriers. Many people are not aware of the typically benign carrier status. Unfortunately, this gives rise to children born with SCD because the trait can be passed to children from the parents. Despite the high prevalence of sickle cell trait carrier status, there is little publicized, educational information on the disease or measures that could be taken to prevent it. Originally, Dr. Scott questioned why her son was born with sickle cell disease. But over time and through becoming involved in community organizations and events which focused on raising awareness for sickle cell disease, Dr. Scott came to realize that this was an opportunity to turn a situation perceived as being a negative (having a child born with a chronic illness) into something definitely positive that could benefit all people and help break the cycle of sickle cell disease.
Impact
Breaking The SSickle Cell Cycle Foundation, Inc. hosts and participates in various community service events which focus on creating an inviting environment for participants to be educated on sickle cell disease and also equip them with the necessary information on how to "break the cycle" of sickle cell disease. Breaking The SSickle Cell Cycle Foundation, Inc. seeks to empower individuals with the necessary information to assist them in making informed decisions regarding future family planning and to provide those living with sickle cell disease, the necessary information that will enable them to have an improved quality of life while living with the chronic condition of sickle cell disease. Since the foundations inception fundraising efforts to support the foundation's operation and the sickle cell community has yielded $30,000. The foundation has either partnered with other organizations or independently hosted 15 distinct sickle cell trait testing sessions in the community, the prevalence rate of detecting previously unknown sickle cell trait status is an aggregate of 1 in 5 based on our testing results. The foundation has interacted with and provided assistance to over 100 families in the Nashville and surrounding areas. Sickle cell patients/caregivers/families have taken advantage of one-on-one consults with a pharmacists/SCD caregiver to help them in the SCD care journey. The organization has partnered with 7 prominent area churches to establish a presence in the faith based community to host sickle cell awareness outreach projects. The organization leverages technology to create virtual meeting spaces to host educational webinars that enable community engagement to persist even when physical meetings are not possible. The organization incorporates sickle cell specific professional development for students and established healthcare professionals. Dr. Scott actively lectures on SCD at local universities and colleges for upcoming healthcare professional students. In addition, she also partners with national organizations to present to established health professionals on best treatment practices in sickle cell disease. Over 600 participants have received instruction from Dr. Scott over the past 5 years. Dr. Scott has represented the foundation in the production of public service announcements via news, radio, and print outlets to emphasize the importance of issues that are pertinent to the advancement of the sickle cell community like research, blood donations, vaccinations, and sickle cell trait testing.
Needs
In the United States, barriers to receiving quality, comprehensive, outpatient preventive and primary care for SCD remain, resulting in health care disparities and inequities. Caregiver and family support for individuals with SCD can be sporadic and fragmented. BTSSCYCLE needs to raise $176,000 to implement a SCD education and awareness program. The program will provide resources and education to participants that will teach preventive measures that can be implemented SCD early in the disease process to help improve long-term outcomes. The program will target patients, healthcare professionals and educators. We need to recruit 4 additional advisory board members to provide guidance and oversight of our programs & service. Recruit 10 new trained volunteers to assist with sickle cell trait testing. Establish close partnerships with community organizations, educational and higher learning institutions and healthcare organizations. The goal is to 1) establish rapport and build relationships among community members and organizations to gain allies in SCD advocacy 2) improve patient/caregiver understanding of SCD that can reduce health-care resource utilization for sickle cell pain management (i.e ER visits) 3) improve foundational understanding of SCD within health and schools.
CEO Statement
Breaking The SSickle Cell Cycle Foundation, Inc., has uniquely qualified leadership at the realm. Dr. Scott is a pharmacist, and mother of a child with sickle cell disease. Dr.
Scott has worked in pharmacy for 20 years and understands first hand the compassion and empathy that is required to provide effective care to vulnerable populations. In addition her personal connections to the challenges and barriers that exists within the sickle cell community allow her to have a real-time pulse on the issues that matter most and able to execute solutions in a direct manner. Over the last 10 years, she has worked in managed care pharmacy assisting organizations with developing strategies to provide cost-effective pharmaceutical care and improving patient outcomes. As a caregiver and healthcare professional, Dr. Scott understands the challenges associated with treating complex conditions like sickle cell disease. In 2015, Dr. Scott decided to leverage her experiences in managed care and community pharmacy and founded a non-profit for sickle cell disease which focuses on promoting community awareness, education, and prevention of sickle cell disease. Dr. Scott has led numerous outreach efforts to educate the community and other healthcare professionals about sickle cell disease. Dr. Scott has been recognized for her involvement in sickle cell advocacy. She was featured in the inaugural edition of PharmaSis Magazine- a magazine that celebrates women in pharmacy, featured on the CDC's website " Real Stories from People Living with Sickle Cell Disease" and she is also a Power Moves Award recipient, an honor that is awarded to "Ordinary people doing EXTRAordinary things" in the community. Dr. Scott contributes to student pharmacist academic development and conducts didactic presentations on sickle cell disease at both the University of TN and Lipscomb College of Pharmacy. Dr. Scott believes patient engagement and inclusion is key to developing best practices for providing care to sickle cell patients. Her contributions have been published in the Journal of Health Care for the Poor and Underserved. Dr. Scott is a hands-on healthcare professional and meets patients and families where they are and provides education and access to resources to help individuals become empowered to take control of their health and sickle cell disease. It will take collective partnerships amongst community stakeholders working together to improve outcomes for patients in the sickle cell community.
Service Categories |
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| Primary Category: | Diseases, Disorders & Medical Disciplines - Heart & Circulatory System Diseases & Disorders |
| Secondary Category: | Medical Research - Heart & Circulatory System Diseases & Disorders Research |
| Tertiary Category: | Diseases, Disorders & Medical Disciplines - Specifically Named Diseases |
Areas Served
| TN - Davidson |
| TN - Franklin |
| TN - Montgomery |
| TN - Rutherford |
| TN - Jackson |
| TN - Williamson |
