California Sickle Cell Resources

12/26/2025

🧑‍🏫 New webinar upload: Translating Health Services Research in Sickle Cell Disease to Policy

Dr. Jean L. Raphael from Baylor College of Medicine and Texas Children's Hospital breaks down what health services research is, why it matters for sickle cell care, and how we can use data (including social determinants of health) to drive real policy change💡📊

🔗 Watch the full webinar here and share with your network: https://youtu.be/BDgKclqsT0c?si=XARso9j4sB-10h8A

👉 Explore other webinar topics on our YouTube channel : https://www.youtube.com/

12/08/2025

💥 Pain care for people living with is often shaped by stigma, policy barriers, and misconceptions about opioids. In this previously recorded webinar, Dr. Wally Smith (Virginia Commonwealth University) offers an honest and evidence-based look at opioid prescribing, the difference between dependence and addiction, and why pain requires a nuanced approach.

This is an important topic for providers, caregivers, and community members invested in improving care 💪🏽
🔗 Watch the full webinar here: https://www.youtube.com/watch?v=4G__J5X9qdo

11/19/2025

How did affect people living with sickle cell disease and sickle cell trait across different states? 🧬

In this webinar, Susan Paulukonis presents findings from the Sickle Cell Data Collection (SCDC) programs in Michigan, Georgia, California, and Tennessee. Discussion includes:
• COVID-19 hospitalizations and deaths among people with and
• Changes in emergency department use before and during the pandemic
• How linked data can inform vaccine outreach, health equity, and better care for sickle cell warriors

📺 Watch the full webinar and more on our YouTube channel: https://www.youtube.com/

*This webinar was previously recorded on October 6, 2022.

11/04/2025

🎥 New webinar upload on our YouTube channel!

We’re excited to share a previously recorded webinar (December
2018) featuring Dr. Kim Smith-Whitley, Director of the Comprehensive Sickle Cell Center and Clinical Director of the Division of Hematology at the Children's Hospital of Philadelphia.

Dr. Smith-Whitley shares her Patient-Centered Outcomes Research Institute (PCORI)-funded work on how to improve quality of life for youth with sickle cell disease as they move from pediatric to adult care.

Her presentation explores the role of community health workers, mobile apps, and multidisciplinary care models in creating smoother, more empowering transitions for young adults with .

👉 Watch the full webinar on our YouTube channel and learn how data and collaboration can support better care across the lifespan: https://www.youtube.com/watch?v=R73BsQxZvM0

11/01/2025

Wishing all our warriors and community members a Happy Halloween! 👻🎃

Have fun and stay safe while celebrating! Remember to stay warm, hydrate, and take care of your health while enjoying the festivities 💜🕸️

10/29/2025

As the holiday season approaches, many are preparing to travel and spend time with family and friends. For those living with sickle cell disease ( ), taking a few extra steps before your trip can help you stay healthy and enjoy the celebrations.

Here are a few reminders before you go:
💊 Pack your medications: Keep them in your carry-on and bring extra doses, just in case.
💧 Stay hydrated: Drink water often, especially on long drives or flights.
🧣 Dress warmly: Avoid extreme temperatures and layer up.
🏥 Plan ahead & identify the nearest emergency departments (EDs) or sickle cell clinics. Knowing where to go in an emergency can give you peace of mind.
💤 Rest and recover: Give your body time to recharge before and after travel.

Wherever this season takes you, take care of your health and travel safely 💜

10/24/2025

🌟 Webinar Highlights: The ST3P-UP Project

This multi-center study, led by Dr. Ifeyinwa Osunkwo and Dr. Raymona Lawrence, explores how structured education and virtual peer mentoring can help young adults with sickle cell disease ( ) transition from pediatric to adult care with greater success.

The ST3P-UP Project focuses on:
🔹 Supporting emerging adults with the tools and confidence needed for long-term care success.
🔹 Community collaboration, bringing together clinics, community-based organizations (CBOs), and patients as equal partners.
🔹 Using Plan-Do-Study-Act (PDSA) cycles and the Six Core Elements of Transition to strengthen care systems.
🔹 Reducing emergency department (ED) visits and improving quality of life through mentorship, education, and quality improvement.

🎥 Watch the full webinar on our YouTube channel: https://www.youtube.com/watch?v=9-9LIrobhTU
*This webinar was previously recorded on February 28, 2019.

10/21/2025

💻 NEW Webinar Upload: The ST3P-UP Project

Dual Principal Investigators Dr. Ifeyinwa (Ify) Osunkwo from Carolinas HealthCare System and Dr. Raymona Lawrence from Georgia Southern University present on the PCORI-funded Sickle Cell Trevor Thompson Transition (ST3P-UP) Project.

This multi-center study examines how adding virtual peer mentoring to a structured, education-based transition program can better support emerging adults with as they move from pediatric to adult care.

The project aims to:
📉 Reduce acute care visits
💬 Improve patient-reported outcomes
🏥 Lower healthcare utilization

Tune in to learn how research and peer connection are helping shape better transitions for young adults living with sickle cell disease 💜

🎥 Watch the full webinar on our YouTube channel: https://www.youtube.com/watch?v=9-9LIrobhTU

*This webinar was previously recorded on February 28, 2019.

10/18/2025

As you wrap up the week, give yourself some grace 💫

You’ve carried so much, let rest and resilience guide you into the weekend 💜

10/14/2025

💬 "We live on the country side in Solano County, California, in a ranch style home on about 20 acres of land, mostly hills, cattle, and horses.

El Iyah, my son was diagnosed with sickle cell at birth. In the first few years, it was very invasive. There were procedures for example that were very challenging for us, that we didn't want to go through again - to see my son exert that much energy...I felt isolated, disempowered, I wasn't sure how to function in those moments."

💫 Hear more about the Brown family's and other sickle cell warriors' inspiring stories: https://tinyurl.com/33t3a3cs

📷 Our photoblog lifts up the voices of Californians living with and their caregivers, sharing not only their challenges, but also their triumphs, , and everyday journeys. This community project is about more than raising awareness. It’s about creating space for warriors and families to tell their stories in their own words, sparking conversations that can lead to greater understanding, compassion, and action.

We hope these stories remind you that no one walks this path alone and that there is always hope for the journey 🌟

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10/09/2025

🩸 What does it mean to have ?
Each child of parents with sickle cell trait has a different chance of inheriting sickle cell disease, sickle cell trait, or neither.

Swipe through to learn more ➡️

10/07/2025

💜 Collaboration and make all the difference.

This webinar highlights how clinical teams and community-based organizations are working together to improve care and quality of life for people living with .

Featuring:
🎙️ Dr. Nik Abdul Rashid – Pediatric Hematologist-Oncologist, Las Vegas, NV
🎙️ Ms. Linetta Barnes – Founder of Sickled Not Broken Foundation of Nevada
🎙️ Ms. Mary Brown – President & CEO, Sickle Cell Disease Foundation of California (SCDF)
🎙️ Ms. Jennifer Fields – Founder & President, The Hills Tandem

Together, they share how data, compassion, and community partnership strengthen support for individuals and families living with .

🎥 Watch the full webinar on our YouTube channel: https://www.youtube.com/watch?v=S74Tqsnd26s

*This webinar was previously recorded on September 18, 2019.

This webinar is on collaboration and community in sickle cell. Dr. Nik Abdul Rashid and Ms. Linetta Barnes from Nevada present on how a clinical group and co...