LETTER FROM THE EXECUTIVE DIRECTOR
It’s been a fruitful 21 years since our grand opening in the year 2000. We began with a Parent Information Series in Burbank, CA with several guest speakers like Gerald Newmark, author of How To Raise Emotionally Healthy Children: Meeting The Five Critical Needs of Children…And Parents Too!, a nutritionist, a social worker, and a MD discussing chronic illness in children such as Sickle Cell Disease, Juvenile Diabetes, Pediatric Asthma and Pervasive Developmental Delays. Throughout the years, we continued our focus on sickle cell disease: educating, advocating, and awareness activities for patients, caretakers, healthcare providers and the general public.
Many of our programs are well established and we’ve introduced a few more.
– Canvassing. Join us as we educate the public on sickle cell disease and sickle cell trait virtually and at health fairs and malls throughout California. Click here for our schedule of volunteer telephone training as well as a list of the various sites throughout the state.
– Advocacy Training. Coming soon.
– Support Groups. We now have five support groups throughout Central and Southern California. Click here for location and schedule of meeting dates and times. Our partners, SCCAC and SCASF have support groups located in Northern California. Click here for their schedule.
– Annual Sickle Cell Disease Educational Seminar. Now, in our official 16th year, join us virtually this year September 16 – 18 202. The theme is Steppin’ Into Tomorrow. We will focus Racism and SCD, Stigma as well as Navigating the Emergency Room over the three days.
– miniSeminars (NEW). Since 2020, we introduced our miniSeminars. This year we focused n The Brain and SCD, Mental Health and SCD, and Sleep and SCD. These were developed to provide the sickle cell community with a more in-depth dive into topics that are patient selected.
-Transition (NEW). We introduced our new Transition program for emerging adults January 2021 and by June graduated our first class. Our I’M READY Program supports transition readiness, allows hospitals and their patients to partner with a community-based organization, and helps actualize our ultimate goal – to save lives and reduce the mortality rate so that our young adolescents in the SCD community can make it to a mature age.
-Authors Corner (NEW). The first in a series of three talks (per year), the Author’s Corner features a discussion led by a physician specialist and include a reading and Q&A from our featured authors who by the way are living with Sickle Cell Disease and/or are caregivers! They will tell you about their reason for writing their respective books and their process for taking it from idea to execution.
– Provider Education:
– Provider In-service Training (COMING SOON). We’ve been working on ways to conveniently share and educate those healthcare providers who may at some point take care of a patient with sickle cell disease. We want them armed with information and the latest research available to manage and treat sickle cell disease.
As of 2015, in partnership with SCDAA, we have been selected as one of the community based organizations to assist persons diagnosed with sickle cell disease to sign up for GetConnected, a sickle cell registry that will lend itself to be quite useful.
In 2018, we were selected as one of 15 CBOs for the HRSA Grant Award “Sickle Cell Disease Newborn Screening Follow-up Program (SCDNBSFP)” whose responsibilities include, but are not limited to: patient recruitment, patient assessment, utilization of Community Health Workers and Educator Counselors, providing community based services, providing care coordination, education on Hydroxyurea and Endari, and partnership building over the next four years.
We hope that the information provided on this website has been helpful. If you did not find what you were looking for, please feel free to call us direct at: 818.940.0079 or e-mail us at: firstname.lastname@example.org.
We are honored to be able to serve you and bring you information that will assist in renewing your mind, body, and spirit. We envision a world that will someday brim over with joy, love, peace, happiness, and great mental and physical health.
Peace and blessings to you all!
Dr. Carolyn Rowley