OPERATIONS REPORT Sickle Cell Foundation of Georgia, Inc

Transcription

1 OPERATIONS REPORT 2018 Sickle Cell Foundation of Georgia, Inc

2 2 OPERATIONS REPORT: SICKLE CELL FOUNDATION OF GA, INC. Strategic Plan Highlights Conducted the first two Non-Specialty Provider Sickle Cell Disease Seminars in Emanuel and Bibb Counties to increase the number of providers in Georgia with up to date information Heighted visibility of SCFG by establishing offices in Savannah and Macon. Currently negotiating office space in Augusta Secured all required certifications and re-established site-based testing, testing over 150 individuals Increased revenues by 24% through the establishment of new partnerships and new grants Recruited and retained staff for key positions in marketing and business development Accomplishments Provided direct services to 2,067 individuals in 64 counties across the State of Georgia Care coordination (CHW) 460 Federal Program Application Assistance 572 Testing 191 Carrier Parent Counseling 844 Counties Served Fulton DeKalb Clayton Cobb Gwinnett Bibb Chatham Other Mailed abnormal hemoglobin notifications to 6,770 parents Provided trait education to 95 health care providers by phone and 2,059 through mailed information Trained 30 non-specialty providers on treatment for individuals with sickle cell disease

3 3 Events and Activities Annual Sickle Cell Road Race The race drew 1,085 runners and walkers and was hosted by WSB TV personalities, Dave Holliston and Mark Winnie; and V-103 radio personality, Larecia Harris. Participants traveled from 18 counties and six states and included 43 runners and walkers representing family members lost to sickle cell disease. A Peachtree Road Race and Road Runners Club of America qualifier, the race generated $64, in revenue with a net of $33, Walk-A-Mile for Sickle Cell The awareness walk was hosted at a new location in 2018, the Westside Beltline. SCFG partnered with Georgia Micro Enterprise Network and the Atlanta Beltline and received in-kind support from the Fulton County Central Training Center. More than 300 registered yielding 150 walkers. Approximately 60 walkers participated in the educational sessions on transition and hydroxyurea, hosted by Novartis Pharmaceuticals. Camp New Hope Even though there was a new camp in 2018 (35 campers), Camp New Hope registered144 children and adolescents with 114 attending. Forty-one (41) volunteer counselors staffed the camp, ranging in age from 20 to 57. Fiftyseven (57%) percent of counselors are living with sickle cell disease and 40% were veteran counselors. Increasingly, former campers are volunteering as counselors. The 24 hour infirmary was staffed by 25 volunteers 12 physicians, 12 nurses (one nurse is a former camper and counselor), and 1 social worker - over the week of the camp. Medical staff included volunteers from Grady Health System, WellStar, Memorial Children s (Savannah), Children s Health Care of Atlanta, Bristol Health, Naval Pediatric Medical Center (Portsmouth, VA), and private practice. Volunteer nurses and counselors traveled from Chicago, Ill; Portsmouth, VA; Phoenix, AZ; Austin, TX; Houston, TX; Warren, OH; and Savannah and Augusta, GA to work camp. The camp hosted visitors from Georgia Department of Public Health; Children s Health Care of Atlanta; SCFG Board of Directors; and the North Alabama Sickle Cell Foundation. I m the woman that I am today because of Camp New Hope Jessica Smith (Bachelor s Degree candidate, former camper, former counselor, camper mother)

4 4 Health Fairs and Presentations Staff participated in 97 health fairs in 2018 reaching 4,751 participates with information on sickle cell disease and SCFG. Five hundred and seventy-six (576) individuals were reached through staff speaking engagements and 2,300 individuals were reached through the Speakers Bureau, a combination of staff and volunteers. Annual Southeastern Sickle Cell Symposium The 2018 symposium, hosted at Morehouse School of Medicine featured medical experts and individuals living with sickle cell disease. Experts focused on the state of sickle cell, treatment, emergency department care. The event featured panel discussions with diverse groups of individuals living with sickle cell disease; parents and caregivers; and compliance specialists. Sickle Cell Day at the Capitol/Advocacy Sickle Cell Day at the Capitol was kicked off by a show of support by members of the General Assembly led by sickle cell champion, Representative Gloria Frazier. Members of the Legislative Black Caucus stood on the Assembly floor dressed in red. Representative Frazier spoke briefly about the impact of sickle cell disease and asked the over 60 participants in the galley to stand if they lost someone, love someone, know someone with sickle cell disease. Over 30 members of the General Assembly attended the program held on the main floor, many of them speaking and offering their support. The 2018 Poster Child gave a passionate speech about living with sickle cell disease. In partnership with Alliant Health, SCFG trained 11 individuals to effectively tell their emergency department story in learning sessions for emergency department personnel designed to improve the quality of care. SCFG successfully restored sickle cell as a line item in the state budget with consistent increases over the last three years. Clinical/Laboratory Services

5 5 The SCFG Laboratory was surveyed by the State of Georgia Healthcare Facility Regulation Division and both the CLIA and State applications were approved for two years, with no requirement for parallel testing. SCFG plans to develop Quality Assurance and Bioterrorism protocols were approved and accepted. The laboratory successfully passed the annual College of American Pathologists proficiency testing. A Certified Technician and former SCFG volunteer, Qualateai Atanda, will assume the position vacated by Tabatha Washington on December 3 rd. Volunteers Over the past year, volunteers have donated 3,990 (750 non-camp) hours to SCFG. Individual volunteer time ranges from 3 hours to over 100 hours. Volunteers have worked at the office and at all SCFG events. SCFG hosted 12 students from the University of South We ve been to other organizations but this (SCFG) has been our best volunteer experience this week and we learned a lot. (University of South Florida student) experience encouraged several of them to get tested. Florida earning community service hours during their Spring Break. The students were not only interested in volunteering but were eager to learn about sickle cell disease and trait. Their Partnerships/Business Development The McGhee King Building, 2390 Benjamin E Mays Drive, SW, has been placed in the United States Registry of Historically Significant Buildings. The designation indicates that the building is worthy of preservation. The designation also makes SCFG eligible for federal tax benefits, including a 20% investment tax credit on qualifying renovations. SCFG was recognized as one of the charities of choice for the 2018 Film Festival. Other partnerships initiated in 2018 include: Outfront Media, as an ongoing advertising partner for the Sickle Cell Road Race in 2018 and 2019 Paine College, host for East Georgia Sickle Cell Disease Seminar for Non-Specialty Providers In-kind sponsorships from Home Depot, Lowe s, Kroger, and Target Jeanette Nu Man, Operations Manager November 29, 2018