Sickle Cell Disease Foundation

07/17/2025

🌟 Calling all families with teens and young adults living with Sickle Cell Disease! 🌟

Join us for our Transition Open House on Thursday, August 28, 2025, from 6–8 PM at the Center for Inherited Blood Disorders (CIBD) in Orange, CA.

This free event is for patients aged 12 and older and their families. Learn about transitioning to adult care, meet your care team, get your questions answered—and enjoy dinner provided by the Sickle Cell Disease Foundation!

✅ Free parking
✅ Supportive, welcoming space
✅ Essential info for your healthcare journey

📞 RSVP with your care team or call CIBD at (714) 221‑1200.

Let’s make the move to adult care easier—together. ❤️🩸

RSVP Here:
https://form.jotform.com/251735465553159
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🌟 ¡Llamando a todas las familias con adolescentes y adultos jóvenes que viven con enfermedad de células falciformes! 🌟

Únase a nosotros para nuestra Casa Abierta de Transición el jueves 28 de agosto de 2025, de 6 a 8 p. m. en el Centro de Trastornos de la Sangre Heredada (CIBD) en Orange, CA.

Este evento gratuito es para pacientes de 12 años o más y sus familias. Aprenda sobre la transición al cuidado de adultos, conozca a su equipo de atención, obtenga respuestas a sus preguntas y disfrute de la cena proporcionada por la Fundación para la Enfermedad de Células Falciformes.

✅ Aparcamiento gratuito
✅ Espacio de apoyo y acogedor
✅ Información esencial para su viaje de atención médica

📞 Confirme su asistencia con su equipo de atención o llame a CIBD al (714) 221‐1200.

Hagamos que el paso al cuidado de adultos sea más fácil, juntos. ❤️🩸

Confirme su asistencia aquí:
https://form.jotform.com/251735465553159

07/14/2025

🎉 It’s Popcorn Time! 🍿
We’re popping for a purpose! Join us in supporting Camp Crescent Moon, our week-long overnight summer camp for chronically ill children living with sickle cell disease.
We’ve partnered with Double Good Popcorn for a tasty fundraiser — 50% of every purchase goes directly to help send our campers to a week full of fun, friendship, and unforgettable memories!
💻 Shop Online: Double Good- http://dgpopup.app.link/nss
Our Page: Sickle Cell Disease Foundation California: https://popup.doublegood.com/s/1b72pyu3
📅 Fundraiser Dates: July 14th, 2025- July 18th, 2025 at 4:00pm
⏳ It’s only open for 4 days, so don’t wait!
Whether you’re a fan of salty, sweet, or spicy popcorn, there’s something for everyone — and every bag helps change a child’s life.
Let’s make this summer magical. 💫

07/02/2025

August 2025 Module 1- Sickle Cell Counselor Training & Certification Program

Registration starts on June 30th | Training

This is a self-paced course, but attendance at one live Cohort Review Session is required after completing Units 1-6. You must attend one of the following sessions:
Friday, August 15th, 2025 or Friday, August 29th, 2025 from 11:00am - 12:00pm (PT) Registration closes on August 26th for this Cohort!

Register here: https://www.scdfc.org/event-details/august-2025-module-1-sickle-cell-counselor-training-certification-program

For additional information email: deborahg@scdfc.org
(909)743-5226
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Agosto de 2025 Módulo 1 - Programa de capacitación y certificación de consejeros de células falciformes

La inscripción comienza el 30 de junio | Entrenamiento

Este es un curso a su propio ritmo, pero se requiere la asistencia a una sesión de revisión de cohortes en vivo después de completar las unidades 1-6. Debe asistir a una de las siguientes sesiones:

Viernes 15 de agosto de 2025 o viernes 29 de agosto de 2025 de 11:00 a.m. a 12:00 p.m. (PT) ¡La inscripción se cierra el 26 de agosto para esta cohorte!

Regístrese aquí: https://www.scdfc.org/event-details/august-2025-module-1-sickle-cell-counselor-training-certification-program

Para obtener información adicional, envíe un correo electrónico a: deborahg@scdfc.org
(909)743-5226
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06/24/2025

Sickle Cell Disease is a autosomal recessive disorder and in these disorders, two copies(1 from Mom & 1 from Dad) of the altered/ mutated gene must be inherited to have an autosomal recessive disorder. Individuals with one altered gene and one unaltered gene are “carriers” who have a genetic trait, but do not show any symptoms of the disease.
Examples:
* Sickle cell disease
* Tay-Sachs disease
* Cystic fibrosis
* Phenylketonuria
Sickle Cell Disease can only be genetically pass down through your Parents DNA.
No it’s not contagious, no you can get it from eating bad foods, and no not only African Americans are affected by sickle cell disease. Sickle cell disease is most prevalent in places with high levels of Malaria

No Warrior should go without these essentials!🌙❤️
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La enfermedad de células falciformes es un trastorno autosómico recesivo y en estos trastornos, se deben heredar dos copias (1 de mamá y 1 de papá) del gen alterado/mutado para tener un trastorno autosómico recesivo. Los individuos con un gen alterado y un gen no alterado son “portadores” que tienen un rasgo genético, pero no muestran ningún síntoma de la enfermedad.
Ejemplos:
* Enfermedad de células falciformes
* Enfermedad de Tay-Sachs
* Fibrosis quística
* Fenilcetonuria
La enfermedad de células falciformes solo se puede transmitir genéticamente a través del ADN de sus padres.
No, no es contagioso, no puedes contraerlo por comer alimentos malos, y no, no solo los afroamericanos se ven afectados por la enfermedad de células falciformes. La enfermedad de células falciformes es más frecuente en lugares con altos niveles de malaria

¡Ningún guerrero debería ir sin estos elementos esenciales! 🌙❤️

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06/24/2025

The SCDF team is thrilled to celebrate Mikeia Green, M.D., on her incredible achievement—graduating from UC Davis School of Medicine!✨🎓

Living with sickle cell disease inspired Dr. Green to pursue a medical career, driven by a deep commitment to underserved communities. Now she begins her journey as a resident doctor at Alameda Health System(Highland Hospital).

We’re honored to witness growth and are grateful for her continued involvement with SCDF.

Congratulations, Dr. Green!🥼🩺

The Sickle Cell Disease Foundation provides life-enhancing education, services, and programs for ind

06/19/2025

Today on Juneteenth, we honor freedom, resilience, and the enduring strength of the Black community.
June 19th, 1865 marked the delayed arrival of freedom to enslaved people in Galveston, Texas—a full two and a half years after the Emancipation Proclamation. Juneteenth is a powerful reminder that justice is not always immediate, but it is always worth fighting for.
At the Sickle Cell Disease Foundation, we stand rooted in that same legacy of endurance and hope. Sickle cell disease disproportionately affects the Black community-yet so often, our warriors are met with delayed care, misdiagnosis, and systemic inequities.
This Juneteenth, we recommit to our mission:
To build a world where individuals with sickle cell disease receive the care and compassion they deserve.
We honor the past by fighting for equity in healthcare today-and every day.
Because true freedom includes access to quality care, compassion, and dignity for all.
✊🏾✊🏿✊🏽✊🏼❤️💚🖤

06/19/2025

Today, on World Sickle Cell Day, we honor the strength, resilience, and beauty of every individual living with sickle cell disease. You are not defined by your pain — you are warriors, you are light, and you are loved. ❤️💛

At the Sickle Cell Disease Foundation, our mission is to build a world where individuals with sickle cell disease receive the care and compassion they deserve. Every step we take is guided by this purpose — and today, we celebrate the lives and legacies of those who inspire that mission daily. 💫

To every patient, caregiver, and supporter: Your courage fuels change. Your voice brings awareness. And your presence reminds the world that we are stronger together.

Together, let’s continue to uplift, educate, and empower. Because every warrior deserves a future filled with hope, healing, and love. 🕊️
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Hoy, en el Día Mundial de las Células Falciformes, honramos la fuerza, la resiliencia y la belleza de cada individuo que vive con la enfermedad de las células falciformes. Ustedes no están definidos por su dolor, son guerreros, son ligeros y son amados. ❤️💛

En la Fundación para la Enfermedad de Células Falciformes, nuestra misión es construir un mundo donde las personas con enfermedad de células falciformes reciban el cuidado y la compasión que merecen. Cada paso que damos se guía por este propósito, y hoy celebramos las vidas y los legados de aquellos que inspiran esa misión a diario. 💫

A cada paciente, cuidador y partidario: Su coraje impulsa el cambio. Tu voz trae conciencia. Y tu presencia le recuerda al mundo que juntos somos más fuertes.

Juntos, sigamos elevado, educando y empoderando. Porque todo guerrero merece un futuro lleno de esperanza, curación y amor. 🕊️



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06/17/2025

Strokes are caused by a blockage of blood to the brain or a bleed in the brain leading to a lack of oxygen. Warriors are at an increased risk to have strokes becausre sickled red blood cells can block blood flow in the blood vessels in the brain.
Some people may experience weakness, inability to speak, difficulty walking, seizure, or sudden strong headache . Some people also pass out due to strokes. These symptoms may come and go, or come up suddenly and not go away.
If you or your child is prescribe medication like Hydroxyuera, taking it daily will help prevent strokes.
For Warriors at risk, we recommend yearly screening with a transcranial doppler(TCD). This is a non-painful ultrasound which can help assess the risk for stroke. If there is any abnormalities seen in your TCD, your SCD provider will discuss a treatment plan for you which could include montly transfusions to prevent strokes.

No Warrior should go without these essentials!🌙❤️

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06/13/2025

📢Join us for a free virtual session specifically designed for individuals and families affected by sickle cell disease.

This Gene Therapy Educational overview will breakdown what gene therapy is, how it works, and what it could mean for the future of sickle cell treatment.

Whether you’re curious, hopeful, or just want to learn more, this is a safe space to ask questions and hear from experts. Come get empowered with knowledge and explore what’s on the horizon for sickle cell care!

📍The virtual session will be held on Wednesday, June 18th, at 7:00pm (PT)
(The signup calendar says 10:00pm ET)

🔗Please register:
https://www.vertexeducators.com/patient-educator-events

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🤔¿Tienes curiosidad por la terapia génica? ¡Únete a nosotros para una visión general educativa!

📢Únase a nosotros para una sesión virtual gratuita diseñada específicamente para individuos y familias afectadas por la enfermedad de células falciformes.

Esta descripción general educativa de la terapia génica desglosará qué es la terapia génica, cómo funciona y qué podría significar para el futuro del tratamiento de células falciformes.

Ya sea que tenga curiosidad, esperanza o simplemente quiera aprender más, este es un espacio seguro para hacer preguntas y escuchar a expertos. ¡Ven a empoderarte con el conocimiento y explora lo que está en el horizonte para el cuidado de las células falciformes!

📍La sesión virtual se llevará a cabo el miércoles 18 de junio a las 7:00 p. m. (PT)
(El calendario de inscripción dice 10:00 p. m. ET)

🔗Por favor, regístrese:
https://www.vertexeducators.com/patient-educator-events

06/10/2025

Acute Chest Syndrome is a very common complication in sickle cell disease that affects the lungs and can make Warriors very sick.
Acute Chest Syndrome can be caused due to the sickling of the red blood cells in the lungs, an infection, low oxygen or other inflammation in the lungs.
Symptoms often include: Fever, chest pain, cough, wheezing, difficulty breathing , low oxygen , and dropped hemoglobin levels.
A chest x-ray is needed to check for & diagnose acute chest syndrome.
Acute Chest Syndrome often occurs the same time as an pain epsode.
Make sure to get checked if you feel any of these symptoms!

No Warrior should go without these essentials!🌙❤️

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El síndrome torácico agudo es una complicación muy común en la enfermedad de células falciformes que afecta a los pulmones y puede enfermar mucho a los Warriors.
El síndrome torácico agudo puede ser causado por la hoca de los glóbulos rojos en los pulmones, una infección, bajo nivel de oxígeno u otra inflamación en los pulmones.
Los síntomas a menudo incluyen: fiebre, dolor en el pecho, tos, sibilancias, dificultad para respirar, bajo nivel de oxígeno y caída de hemoglobina.
Se necesita una radiografía de tórax para verificar y diagnosticar el síndrome torácico agudo.
El síndrome torácico agudo a menudo ocurre al mismo tiempo que una epsode de dolor.
¡Asegúrate de que te revisen si sientes alguno de estos síntomas!

¡Ningún guerrero debería ir sin estos elementos esenciales! 🌙❤️

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