CAYENNE WELLNESS CENTER AND CHILDRENS FOUNDATION INC
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Mission Statement
“To increase the quality of life for individuals diagnosed with sickle cell disease in California by ensuring expert, unbiased, and comprehensive care.” This mission is part of a broader vision of (1) a medical system that effectively addresses the unique needs of individuals with sickle cell disease and (2) patients who are empowered and equipped to advocate for themselves.
About This Cause
We began with providing holistic health to the general population and at least 50% of our time to persons diagnosed with Sickle Cell Disease. Over the years, this percentage grew to 60%, 80% and now 100%. Due to the need, our focus is entirely dedicated to persons diagnosed with Sickle Cell Disease. Our primary aim is to reduce the mortality rate and improve the quality of life of patients diagnosed with Sickle Cell Disease (SCD) in California. Our year-round projects include: • Public Outreach and Awareness: We rely solely on volunteers to educate the public. We provide training and education to all volunteers prior to canvassing. Our outreach program includes a presence at shopping malls, schools, and health fairs throughout California at different times throughout the year. Our informational table contains numerous educational brochures on SCD including information on newborn screening and the importance of knowing one's Sickle Cell trait status. As of January, 2018 we began a partnership with two CBOs in Northern California in an effort to canvass year-round. • Provider and Patient Education: This program fills the education gap that often exists between the community, those affected by SCD, and medical providers by offering direct information on the disease, how to improve quality of life, the latest research, clinical studies, support groups, and additional SCD topics. This program is an annual statewide educational event that includes more in-depth information delivered and shared by medical professionals associated with research and treatment of Sickle Cell Disease. • Monthly Regional Patient Support Groups: Our support groups are located in the following areas: San Diego, Los Angeles, Loma Linda/San Bernardino County, Antelope Valley, Bakersfield, and Fresno, CA. • Provider In-Service Training: According to the Center for Disease Control (CDC) and The American Society of Hematology (ASH), one of the primary reasons for increased mortality rates of Sickle Cell Disease patients in California is because medical personnel have not been adequately trained on long-term management and treatment of the disease and how to administer effective adult patient care. We have devised a program designed to reduce mortality by having California hospitals choose to become Sickle Cell Hospitals of Excellence. By participating and completing five modules (similar in fashion to hospitals following the stroke model), California hospitals will be identified and patients can go to hospitals with confidence that these hospitals have met both the standards of care and are following evidence-based guidelines for the treatment and management of Sickle Cell Disease. Though located in the San Fernando Valley, our outreach expands throughout all of California. We provide nutritional education throughout Southern California, mental health via support groups, education, awareness and advocacy of Sickle Cell Disease statewide. September is national SCD awareness month. Prior to 2005, no one in the state of California assembled awareness activities on behalf of Sickle Cell Disease. In 2005, we organized what is known as the Unveil Sickle Cell Project and implemented the Annual SCD Educational Seminar (now a statewide event); moderated the Los Angeles Support Group (now we have six support groups across the state from San Diego to Fresno), invited the community to both advocate with us as well as we advocate on behalf of patients to assist them in navigating the stigmatization and racial injustices while seeking unbiased and evidenced-based care at hospitals. For example, we educated the stakeholders in using their voices to advocate for change. Today, five years later, the Sickle Cell Treatment Act has finally passed the Senate (Bill S. 2465). As well, by partnering with hospitals, we're in a better position to advocate on behalf of patients that utilize the Emergency Department. We also canvass and educate the public on Sickle Cell Disease and Sickle Cell Trait in an effort to get people to know their trait status.