LETTER FROM THE EXECUTIVE DIRECTOR
It’s been a fruitful 18 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’re working on introducing a few more.
– Canvassing. Join us as we educate the public on sickle cell disease and sickle cell trait 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 partner, SCCAC has a support group located in Northern California. Click here for their schedule.
– Annual Sickle Cell Disease Educational Seminar. Now, in our official 11th year, join us at UC Davis Medical Center, Sacramento, CA September 6 – 8 2018. The theme is integrative medicine and sickle cell disease. Learn about the scientific evidence behind integrative medicine approaches to help manage pain. These modalities include acupuncture, aromatherapy, breathing exercises, diet-based therapy, guided imagery, hypnosis, massage, meditation, mind-body exercises (yoga, and tai chi, ), music therapy, and supplementation.
– Provider In-service Training. 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