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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.​

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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? 

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This is the program for you!

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Dr. Mark Walters

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"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."

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Schedule (Presenter List):

All of the presenters have been confirmed.

* If you register and attend several sessions, you can receive a SCAA Health and Wellness backpack. The items inside the backpack include assorted essentials you can utilize when going to the hospital, during your stay at the hospital and when you are leaving the hospital. *

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Items inside the backpack include:

  • Blanket 

  • Water Bottle 

  • Journals 

  • Pen

  • Hertz Nazaire Coloring Book

  • 50 Coloring Pencils

  • Mindfulness links/recording - Jason

Program Details:

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Location: Virtual Only on Zoom

Meetings Times: 11am to about 1pm

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Description:

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. There will be a variety of presenters’ clients, nurses, physicians and key professionals sharing and discussing issues to engage attendees.

 

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.

  • The second portion of the webinar is the implementation of the educational content learned, with journaling, along with discussions pertaining to real-world experiences

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2023 Videos
Health Disparities in Sickle Cell Treatment - SCAASF AEP Session
01:12:36

Health Disparities in Sickle Cell Treatment - SCAASF AEP Session

This session features Dr. Marsah Treadwell This is a recorded session of where Dr. Marasah talks about priorities of Sickle Cell Disease, inequality in funding, and future steps. ----------------------------------------------------------------------------------------------------------------------- ABOUT: The 2023 Advocacy and Empowerment Program Course Training is a program for the sickle cell community inspired by Sickle Cell Anemia Awareness of San Francisco, non-profit. This program spans over 9 months of the year, with one 1-2 hour meeting sessions every month. It is led by experienced sickle anemia disease medical professionals and patient community leaders who are working to broaden awareness and improve healthcare for sickle cell patients. For more information about our organization and resources, visit: https://www.scaasf.org/ For information about our 2023 Advocacy and Empowerment program and list of speakers, visit: https://www.scaasf.org/advocacy-and-empowermentt
NUTRITION | Sickle Cell Patients | SCAASF AEP Session
02:12:40

NUTRITION | Sickle Cell Patients | SCAASF AEP Session

This session features Christen Brown, a community leader, social scientist and entrepreneur. He is the Creative Director of Creation Of Society, and his work has been to connect community needs to community-controlled solutions in the forms of, but not limited to, rites of passage, product quality control, educational workshops, entrepreneurship trainings and skill development seminars. This is a recorded session of where Christen talks about nutrition content for Sickle Cell patients. ----------------------------------------------------------------------------------------------------------------------- ABOUT: The 2023 Advocacy and Empowerment Program Course Training is a program for the sickle cell community inspired by Sickle Cell Anemia Awareness of San Francisco, non-profit. This program spans over 9 months of the year, with one 1-2 hour meeting sessions every month. It is led by experienced sickle anemia disease medical professionals and patient community leaders who are working to broaden awareness and improve healthcare for sickle cell patients. For more information about our organization and resources, visit: https://www.scaasf.org/ For information about our 2023 Advocacy and Empowerment program and list of speakers, visit: https://www.scaasf.org/advocacy-and-empowermentt
Mental Health for Sickle Cell Patients- SCAASF AEP Session
02:07:24

Mental Health for Sickle Cell Patients- SCAASF AEP Session

This session features Dr. Carolyn Rowley This is a recorded session of where Dr. Rowley talks about her experiences in treating patients and families with sickle cell disease, and successful living for patients. "Dr. Carolyn Rowley is the Founder and Executive Director of Cayenne Wellness Center and Children’s Foundation (a non-profit organization dedicated to health and wellness). In her role as Executive Director, she specializes in nutrition (well known for her 3-4-4 nutritional program), health psychology and treating patients and their families with sickle cell disease. She also began another non-profit organization in 2005, as a result of her missionary experience to Kenya, East Africa (The Machao Orphanage Foundation). ----------------------------------------------------------------------------------------------------------------------- ABOUT: The 2023 Advocacy and Empowerment Program Course Training is a program for the sickle cell community inspired by Sickle Cell Anemia Awareness of San Francisco, non-profit. This program spans over 9 months of the year, with one 1-2 hour meeting sessions every month. It is led by experienced sickle anemia disease medical professionals and patient community leaders who are working to broaden awareness and improve healthcare for sickle cell patients. For more information about our organization and resources, visit: https://www.scaasf.org/ For information about our 2023 Advocacy and Empowerment program and list of speakers, visit: https://www.scaasf.org/advocacy-and-empowermentt
Is Stem & Gene Therapy For You? Managing the Sickle Cell Identity Crisis- SCAASF AEP Session
02:00:42

Is Stem & Gene Therapy For You? Managing the Sickle Cell Identity Crisis- SCAASF AEP Session

This is a recorded panel session features Dr. Mark Walters, Christelle Salomon, and Jimi Olaghere. Dr. Mark Walters shares his research background and discusses the future directions for treatments for Sickle Cell patients. Christelle is a Haitian American and sickle cell warrior. She had been living with SCD, HbSC for 28 years until she received a stem cell transplant in 2022. Jimi is another sickle cell warrior. He shares his journey as a CRISPR gene therapy recipient, and how that changed his life. ----------------------------------------------------------------------------------------------------------------------- ABOUT: The 2023 Advocacy and Empowerment Program Course Training is a program for the sickle cell community inspired by Sickle Cell Anemia Awareness of San Francisco, non-profit. This program spans over 9 months of the year, with one 1-2 hour meeting sessions every month. It is led by experienced sickle anemia disease medical professionals and patient community leaders who are working to broaden awareness and improve healthcare for sickle cell patients. For more information about our organization and resources, visit: https://www.scaasf.org/ For information about our 2023 Advocacy and Empowerment program and list of speakers, visit: https://www.scaasf.org/advocacy-and-empowermentt
What is Sickle Cell? | SCAA AEP 2023 Ted Love, Kobe Dufu
02:10:10

What is Sickle Cell? | SCAA AEP 2023 Ted Love, Kobe Dufu

This is a recorded panel session features Dr. Ted Love and Dr. Kobe Dufu. Dr. Ted Love joined GBT in June 2014 as president and chief executive officer with broad leadership and management experience in the biotech/pharmaceutical industry. Dr. Kobe Dufu immigrated from Ghana and holds a PhD in Molecular and Cell biology from Harvard Medical School. With 18 years of industry research and development experience at companies including Biogen, GBT and Pfizer, Kobe has expertise in rare hematological diseases, a strong publication record and proven success at progressing drug discovery programs for both small molecules and biologics from target identification through preclinical and clinical development to approval. ----------------------------------------------------------------------------------------------------------------------- ABOUT: The 2023 Advocacy and Empowerment Program Course Training is a program for the sickle cell community inspired by Sickle Cell Anemia Awareness of San Francisco, non-profit. This program spans over 9 months of the year, with one 1-2 hour meeting sessions every month. It is led by experienced sickle anemia disease medical professionals and patient community leaders who are working to broaden awareness and improve healthcare for sickle cell patients. For more information about our organization and resources, visit: https://www.scaasf.org/ For information about our 2023 Advocacy and Empowerment program and list of speakers, visit: https://www.scaasf.org/advocacy-and-empowermentt
Navigating Healthcare Resources - SCAA SF AEP 2023
52:44

Navigating Healthcare Resources - SCAA SF AEP 2023

This session features SCAASF Outreach Coordinator/Excel Channel Host & SCAASF Community Health. This is a recorded session of an in depth workshop on helping SCD community find resources within their county to increase their daily quality of life and financial assistance. This workshop will teach you to find these readily available resources and understand the documents given when you apply so you can apply and receive aid successfully. Below are topics touched upon: 0:00:05- What is "In Home Care services"? 0:09:36- IHSS Covered Services 0:31:18- IHSS Hourly Task Guideline 0:32:50- Right to Appeal 0:36:26 - Pay Rates 0:38:31 - Genetic Handicap Person Program - Sickle Cell Disease Association of America - Supplement - SCAASF client Assistance for financial hardship - Medi-Cal enrollment ----------------------------------------------------------------------------------------------------------------------- ABOUT: The 2023 Advocacy and Empowerment Program Course Training is a program for the sickle cell community inspired by Sickle Cell Anemia Awareness of San Francisco, non-profit. This program spans over 9 months of the year, with one 1-2 hour meeting sessions every month. It is led by experienced sickle anemia disease medical professionals and patient community leaders who are working to broaden awareness and improve healthcare for sickle cell patients. For more information about our organization and resources, visit: https://www.scaasf.org/ For information about our 2023 Advocacy and Empowerment program and list of speakers, visit: https://www.scaasf.org/advocacy-and-empowermentt
Nothing is "Impossible" - SCAA SF AEP 2023
01:37:11

Nothing is "Impossible" - SCAA SF AEP 2023

This session features Entrepreneur & Coach Victor Reynolds. This is a recorded session of where Victor talks about how to achieve that "impossible" goal through various mindset techniques. ----------------------------------------------------------------------------------------------------------------------- ABOUT: The 2023 Advocacy and Empowerment Program Course Training is a program for the sickle cell community inspired by Sickle Cell Anemia Awareness of San Francisco, non-profit. This program spans over 9 months of the year, with one 1-2 hour meeting sessions every month. It is led by experienced sickle anemia disease medical professionals and patient community leaders who are working to broaden awareness and improve healthcare for sickle cell patients. For more information about our organization and resources, visit: https://www.scaasf.org/ For information about our 2023 Advocacy and Empowerment program and list of speakers, visit: https://www.scaasf.org/advocacy-and-empowermentt
2022 AEP Sessions
SCAA SF AEP 2022- Art of Advocacy
01:48:07

SCAA SF AEP 2022- Art of Advocacy

This session features Eugene Canson, a public health professional and community advocate who is passionate about improving the health and well-being of individuals in underserved and marginalized communities. Eugene believes that public policy and community advocacy has a significant impact on population health and well-being. Therefore, in efforts to improve the vitality, longevity, and well-being of our communities, he continues to be an advocate for equitable policies and solutions that positively impact society. Since moving to the Bay Area in 2018, Eugene has worked diligently to advocate for innovative and proactive solutions in efforts to address the alarming health inequities that exist in California. Eugene holds a Master of Public Health (MPH) from Indiana University, and a Bachelor of Science (B.S.) from Pacific Union College. He is also an inducted member of the Delta Omega National Honorary Society for studies in public health. ----------------------------------------------------------------------------------------------------------------------- ABOUT: The 2022 Advocacy and Empowerment Program Course Training is a program for the sickle cell community inspired by Sickle Cell Anemia Awareness of San Francisco, non-profit. This program spans over 9 months of the year, with one 2-3 hour meeting sessions every month. It is led by experienced sickle anemia disease medical professionals and patient community leaders who are working to broaden awareness and improve healthcare for sickle cell patients. For more information about our organization and resources, visit: https://www.scaasf.org/ For information about our 2022 Advocacy and Empowerment program and list of speakers, visit: https://www.scaasf.org/advocacy-and-empowermentt
SCAA SF AEP 2022- The Secret to Relationships
01:54:29

SCAA SF AEP 2022- The Secret to Relationships

This session features Shirley Powell, a sickle cell warrior, who was led on a journey of discovering a holistic way to overcome her health challenges through God’s natural provisions and living by holistic principles. For the next 25 years, she experienced only two pain episodes, and she was able to experience vigor and vitality that she did not know was possible, without any drugs or surgery. She also permanently overcame hypothyroidism, eczema, IBS, chronic UTI’s and URI’s, and other issues. In 2001, she co-founded and was the executive director of an alternative medicine practice and health ministry in metro D. After formal coursework through the International Institute of Original Medicine, in 2005, she received her degree as a Doctor of Naturopathy, Certified Health Practitioner, and Certified Nutrition Counselor, specializing in corrective and remedial nutrition for healing, wellness, and weight loss. She then launched Temple Care: Body, Mind & Spirit, a holistic natural healing and wellness practice, helping people overcome a variety of health challenges. Until her semi-retirement in 2016, she had offices in Northeast Alabama, Maryland, and the DC metropolitan area. She is author of "Making Friends With Food - Honoring the Body Temple Nutritionally; from 2005 to 2015, she was writer and editor of monthly e-newsletter, "Healthy Living"; she has been host and guest on various health and wellness radio programs; conducted healthy food preparation demonstrations; taught Overcoming Abuse and Setting Boundaries for the Christian Women's Job Corp; and had been a member and volunteer of various service and outreach organizations. She is originally from North Jersey, lived in the DC metro area for three decades, lived in northeast Alabama for ten years, and is now happily a resident of Southern California. ----------------------------------------------------------------------------------------------------------------------- ABOUT: The 2022 Advocacy and Empowerment Program Course Training is a program for the sickle cell community inspired by Sickle Cell Anemia Awareness of San Francisco, non-profit. This program spans over 9 months of the year, with one 2-3 hour meeting sessions every month. It is led by experienced sickle anemia disease medical professionals and patient community leaders who are working to broaden awareness and improve healthcare for sickle cell patients. For more information about our organization and resources, visit: https://www.scaasf.org/ For information about our 2022 Advocacy and Empowerment program and list of speakers, visit: https://www.scaasf.org/advocacy-and-empowermentt
SCAA SF AEP 2022-The Future of SCD Treatments
03:14:26

SCAA SF AEP 2022-The Future of SCD Treatments

This session features Asi-Yahola Boutelle, a community health activist and graduate student living in New York. He holds Master's Degrees in Biomedical Sciences and Bioethics, and is currently pursuing his MPH (Master's in Public Health) and M.D. (Medical Doctor degree). --------------------------------------------------------------------------------------------------------------------------- ABOUT: The 2022 Advocacy and Empowerment Program Course Training is a program for the sickle cell community inspired by Sickle Cell Anemia Awareness of San Francisco, non-profit. This program spans over 9 months of the year, with one 2-3 hour meeting sessions every month. It is led by experienced sickle anemia disease medical professionals and patient community leaders who are working to broaden awareness and improve healthcare for sickle cell patients. For more information about our organization and resources, visit: https://www.scaasf.org/ For information about our 2022 Advocacy and Empowerment program and list of speakers, visit: https://www.scaasf.org/advocacy-and-empowermentt
SCAA SF AEP 2022- Bone Health & Iron Overload with Dr. Bukari
01:57:36

SCAA SF AEP 2022- Bone Health & Iron Overload with Dr. Bukari

This session features Dr. Mohammed Sani Bukari, MD, Assistant Clinical Professor, Division of hematology and oncology, Department of internal medicine UCSF Fresno (Joined Sept 2017). ​ He discusses details and importance of bone health and iron overload in this session. --------------------------------------------------------------------------------------------------------------------------- ABOUT: The 2022 Advocacy and Empowerment Program Course Training is a program for the sickle cell community inspired by Sickle Cell Anemia Awareness of San Francisco, non-profit. This program spans over 9 months of the year, with one 2-3 hour meeting sessions every month. It is led by experienced sickle anemia disease medical professionals and patient community leaders who are working to broaden awareness and improve healthcare for sickle cell patients. For more information about our organization and resources, visit: https://www.scaasf.org/ For information about our 2022 Advocacy and Empowerment program and list of speakers, visit: https://www.scaasf.org/advocacy-and-empowermentt
Investigating and Engineering Genetics i...
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