News & Updates
Coming Soon! The brand new MLK Jr. Outpatient Center for Adults with Sickle Cell Disease.
In response to the great need in Los Angeles, where a majority of California adults with SCD live, the Sickle Cell Disease Foundation of California is proud to announce that LA County Department of Health Services will be offering clinical services specifically tailored to meet the needs of adults with SCD at the MLK Jr. Outpatient Center in the late summer of 2016.
The clinic will fill a major gap in expert health care services for over 1,000 Los Angelino adults with this devastating disorder who are not only African American, but also Hispanic, South Asian and of Middle Eastern descent.
Due to the loss of treatment centers and skilled healthcare providers, life expectancy is now under 40 years of age among Los Angeles adults with SCD (citation: Powars, Darleen R., et al. "Outcome of sickle cell anemia: a 4-decade observational study of 1056 patients." Medicine 84.6 (2005): 363-376). This is despite advances in care through new medications and gene therapy nationally.
“We know that there is a large community of adults with SCD in the neighborhoods served by MLK Jr. Outpatient Center,” said Ellen Rothman, the Chief Medical Officer at MLK Jr. Outpatient Center. “We are planning an innovative and collaborative approach to provide not just specialty hematology, but also primary care, mental health services, comprehensive pain management including alternative therapies, and peer navigators. We are working with our campus partners, the Department of Mental Health and the MLK Community Hospital to provide the whole spectrum of services.”
There has been no sickle cell clinic at MLK since former U.S. Surgeon General David Satcher’s SCD research center at the former King/Drew Medical Center closed decades ago. This is a sorely needed community resource.
The development of multidisciplinary SCD services at MLK was initiated by the Pacific Regional Sickle Cell Collaborative, a new federal project that is introducing a regional approach to expand healthcare access for patients throughout eight Western United States.
Principal Investigator, Diane J. Nugent, MD, Founding President of the Center for Inherited Blood Disorders in Orange County, CA, states, “The loss of care for patients with SCD over the past two decades is a healthcare tragedy and is a consequence of our system’s lack of recognition and support for the interdisciplinary teams needed to support families and patients with complex, chronic disease. The new MLK services are at one of many new sites needed throughout Southern California to improve outcomes and quality of life for all patients.”
“Adults with sickle cell disease deserve health care providers that understand the disease, its complications, and their pain. Knowing the MLK staff planning and providing the services gives me great confidence they will meet the community’s needs,” states Mary Brown, President and CEO of the Sickle Cell Disease Foundation of California, the lead community based organization in the Collaborative.
About MLK Jr. Outpatient Center
The Martin Luther King, Jr. Outpatient Center is named after Dr. King, a champion of equality for all people and an advocate for health care. Following the 1965 Watts Riots, a commission reported a lack of access to health services as one of the contributing factors to the civil unrest, leading to a task force that laid the groundwork for a County-run, full-service hospital serving South Los Angeles. MLK Hospital opened its doors in 1972 and served as a teaching institution for medical students completing their graduate medical education. In 2007, the hospital was transitioned to a Multi-Service Ambulatory Care Center offering a full spectrum of primary and specialty services. The organization moved into a brand new facility in 2014 under a new name, MLK Jr, Outpatient Center. The leaders and staff are committed to providing compassionate, high-quality care that improves the health of patients and their families. http://dhs.lacounty.gov/wps/portal/dhs/mlk
The Pacific Sickle Cell Regional Collaborative is funded through a grant from the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Sickle Cell Disease Treatment and Demonstration Program. We are one of four regional grantees in the United States, and we are further assisted by the National Institute for Children’s Health Quality. Goals include increasing the number of providers who are well-educated about sickle cell disease care and improving access to the best care for children and adults with sickle cell disease, no matter where they live or seek care in the region. http://pacificscd.org/
Paramount Pictures Annual Day of Service June 2016
Each year Paramount Pictures hosts an annual day of service in which Viacom’s employees dedicate a day (Viacommunity Day) of giving back to the community.When we were approached, they were hoping to aid with some work or activity needed for Camp Crescent Moon and we were excited. A few of our employees got together and decided to ask if they could make our banners for the week. They agreed and on May 20th they were busy on the lot working for Camp Crescent Moon.Here is a glance of what Viacommunity day looks like. Between the hours of 10:30AM – 1PM, employees drop in and work on a project that benefits one of the organizations they have paired with. This year 10 organizations were selected. We were fortunate to be chosen as one of the organizations this year. Throughout the day about 20 employees worked on each project and our banners look great!!!
A special thank you to Jasmine Eusebio, Erin Jordan and the employees of Viacom. The campers and staff of Camp Crescent Moon thank you!!! #paramountpictures
2016 Camp Crescent Moon Walk-a-Thon May 2016
The Sickle Cell Disease Foundation of California was proud to have the 6th annual Camp Crescent Moon 5K Walk-a-Thon. The Walk was attended by over 500 people at Los Angeles Southwest College. This year’s Grand Marshal Veronica Lilly was in great spirits as she received a foundation jacket and a plaque commemorating her fundraising efforts. She has raised over 8,000.00 in the last 4 years. This year’s Walk-a-Thon raised a total of 35,017.75 towards Camp Crescent Moon. Click here to see pictures from the event.
Mast Therapeutics Completes Patient Enrollment In Pivotal Phase 3 "EPIC" Study For The Treatment Of Sickle Cell Crisis.
YOUNG PHILANTHROPISTS MAKING A DIFFERENCE FOR CAMP CRESCENT MOON.Jan 2016
Philanthropy, and being a leader for social change, is no longer about the big checks written by millionaires and billionaires. More and more young people are becoming the changes that they want to see in the world. CCTV America featured young people making a difference by helping or creating charities. One of the charities featured is "Cookies for Camp". "Cookies For Camp" raises monies for children with Sickle Cell Disease to go to Camp Crescent Moon. SCDFC sends a special thank you to Natalie, her mother Dawn and all of the young people that have helped with "Cookies for Camp". Camp Crescent Moon appreciates your continued support. Please Watch Below
Community Health Workers are Bringing the SCD Community Together. Dec 2015
National Newborn Screening Program is supporting the efforts of the Sickle Cell Disease Association of America (SCDAA) by working with community-based organizations (CBOs) to implement framework that overcomes the social and service access obstacles to linking people with sickle cell disease (SCD) and their families to knowledgeable service providers. Community health workers can bridge the gap between the SCD community and quality medical, education, and counseling support for unmet needs and comprehensive life quality care.
This national effort will serve to enhance the efforts of CBOs in identifying individuals living with SCD and in enrolling those individuals into the SCDAA-developed patient-centered national registry, Get Connected. Click below to read the entire grant proposal.