Advocacy and Empowerment Program
Advocacy is a process.
Self Advocacy is the ability to articulate one's needs & make informed decisions about the support necessary to meet those needs.
Empowerment is preparing people to take control.
Do you know anyone or does someone in your family have Sickle Cell Disease (SCD)?
Are you a caregiver or advocate?
This is the program for you!
Dr. Mark Walters
"Dr. Walters is the Jordan Family Director of Bone Marrow Transplantation at UCSF Benioff Children’s Hospital Oakland. He has been the director of stem cell therapy and a division leader since 1999. He has devoted his research career to pursuing curative therapies for hemoglobin disorders with an overarching goal of expanding this treatment more broadly to affected individuals. With NIH and industry support, Dr. Walters has conducted a number of multicenter clinical trials for sickle cell disease and thalassemia. He is currently focused on initiating early phase clinical trials to test novel genomic editing techniques in hematopoietic stem cells (HCT) from individuals affected by hemoglobin disorders, starting with a high-profile trial in sickle cell disease."
"Christelle is a Haitian American, Boston-native, sickle cell warrior who found her home in California 6 years ago. Christelle had been living with sickle cell disease, HbSC, for 28 years until she received a stem cell transplant in January of 2022. Christelle’s experiences as a patient play a pivotal role in her career goals as an aspiring physician-scientist. When she is fully recovered from the transplant, Christelle plans to return to medical school to finish her training. In her free time, she enjoys catching rays on the beach, cooking dishes from all cuisines, and dancing kizomba and salsa."
"Jimi Olaghere is a successful e-commerce entrepreneur, father of 3 children, and sickle cell warrior. Jimi was an early recipient of CRISPR gene therapy through his participation in a clinical trial through Vertex Pharmaceuticals. Jimi has been featured in many science and technology articles, where he openly shares about the difficulties of living with SCD, his journey through the gene therapy process, and how his life has changed since then."
Schedule (Presenter List):
All of the presenters have been confirmed.
*Upon completion of attending several sections program you can receive a Health and Wellness Backpack filled with assorted essentials you can utilize when going to the hospital, during your stay at the hospital and when you are leaving the hospital. You must register in advance for all meetings either through our email reminders or the registration button found at the top of this page.*
Items inside the backpack include:
Hertz Nazaire Coloring Book
50 Coloring Pencils
Mindfulness links/recording - Jason
Location: Virtual Only on Zoom
Meetings Times: 11am – ~1pm
In January 2020 SCAASF launched the Advocacy and Empowerment Program (AEP) with sessions once a month at the South Beach Harbor Community room located 3 blocks from AT&T Ballpark in San Francisco.
The program is created for all stakeholders (clients, caregivers, medical students, medical professionals and advocates). It is designed to explore advocacy and educate to be empowered.
The Advocacy and Empowerment Program is comprised of two primary segments.
The first portion of the webinar is designed to introduce the audience to core educational content and the exploration of self-advocacy.
The second portion of the webinar is the implementation of the educational content learned, with journaling, some role playing, along with discussions pertaining to real-world experiences.
There will be a variety of presenters’ clients, nurses, physicians and key professionals sharing and discussing issues to engage attendees.