Sickle Cell Community Consortium

02/11/2026

If you’re a US-based SCD family who has undergone gene therapy or hematopoietic stem cell
transplantation (HSCT), you can take part in a study to better understand the overall
experiences of patients and families. Complete the 30-minute survey and a 60-minute follow-up
interview to receive a $200 honorarium.
You’ll be part of a first-of-its-kind study to gain a better understanding of the physical, social,
emotional, and other experiences of Sickle Cell Disease (SCD) Warriors, who have undergone
gene therapy or hematopoietic stem cell transplant (HSCT), and their family members. The
results of this IRB-Approved research will be used to create educational and support resources.
To find out if you’re eligible and share your voice, visit this link, and click the orange “start”
button to begin.
The study is being sponsored and led by Beam Therapeutics, with support from Engage Health.
Note: SCD Warriors who have received gene therapy through the Beam Therapeutics& #39; trial
Beam-101 are not eligible for this study.

https://www.engagehealth.com/survey/LoginCode.aspx?SurveyID=q7KK49m1

02/10/2026

Unboxing with our Social Media Manager 👀📦

Have you saved the dates? Leadership Summit | April 7–11, registration drops soon and we’ve got BIG things planned this year 🔥

Shoutout to our new partners 🤝 We have more partners than ever, which means greater impact for the sickle cell community ❤️

Learn more at SickleCellConsortium.org we’re just getting started ✨

02/09/2026

Tonight is the deadline to Make a Difference and become a partner in impactful work for the sickle cell community 💪🏽🩸

This is your chance to be in the room where solutions are created, voices are elevated, and real change happens.

✨ Partner Benefits Include:
• Strategizing solutions in the sickle cell community
• Collaborating on projects that directly benefit the SCD community
• Access to the Speakers Bureau
• No fee. No membership dues.

If you care about advocacy, education, and improving the lives of warriors and families, this is for YOU.

🗓 Deadline: February 6 at 11:59 PM EST
🔗 Sign up or renew: https://tinyurl.com/partnerwithsc326

Don’t sit this one out. Be part of the impact.

02/09/2026

Repost from
•
Which of these Top 5 Sickle Cell foods already features in your diet? Are there any here you’re going to start eating more of?

02/09/2026

Happy Birthday, LaNita 🎉

Today we are celebrating LaNita, our credentialing queen, speaker management pro, and all around powerhouse here at SC3. She keeps the details tight, the speakers supported, and the behind the scenes moving exactly how they should.

Your leadership, consistency, and care do not go unnoticed. We are better because of the work you do and the energy you bring to the team.

Help us wish LaNita the happiest of birthdays and an even bigger year ahead. We love you here at SC3 💙🎂 .ls.80

02/08/2026

Repost from
•
The dream is realer than ever. The stakes are higher than ever. February 20th & 23rd, let’s make history, together. Ticket link in my bio. 🙏🏾🫶🏾💪🏾
Have you purchased your tickets yet?

02/07/2026

🚨 Partner Meeting is LIVE right now
We need every partner in the room. If you have not joined yet, hop on immediately.
What we cover impacts: eligibility, participation, and how we move forward together. Key deadlines are coming fast.

Tonight’s agenda

Leadership Summit updates, April 7 to 12
A new partnership
Partner input on the Summit agenda
Stakeholder Convening expectations
Nominations and elections, plus candidate remarks
Can’t attend
CBOs, send a delegate who can take notes and report back
📩 Check your email for the Zoom link from Maria Rivera
No link, email: mrivera@sicklecellconsortium.org

02/05/2026

We love to see WINS!!!!
Shoutout to our partners at Sickle Cell Foundation of Minnesota for a big advocacy win that benefits Minnesota families directly. Federal funding was secured for key sickle cell programs that strengthen treatment support, newborn screening follow up, and data collection.
This is the kind of progress we need, and we are proud of them. Take a minute to read their post, share it, and drop a congratulations in the comments.
And yes, we keep pushing, because level funding is not enough, equity level investment is the goal. Sickle Cell Foundation of Minnesota

✨ Big wins in Congress for sickle cell — and Minnesota benefits directly.

Federal funding was secured for key sickle cell programs:

💼 $8.205M for SCD Treatment Support
👶🏾 $7M for Newborn Screening Follow-Up
📊 $6M for CDC SCD Data Collection (SCDC)

💪🏾 These programs help strengthen care and visibility for families right here in MN.
But let’s be honest: level funding is not enough.
The needs are massive, and sickle cell remains deeply underfunded.

📣 We’re calling for equity-level investment across government, Healthcare AND Industry — not just crumbs.

Minnesota, we keep pushing upstream. ❤️

02/05/2026

First Friday Partner Meeting, attendance is important.
This Friday’s First Friday Partner Meeting is a must attend. We need every partner in the room. The information we cover impacts eligibility, participation, and how we move forward together in the coming weeks. There are key deadlines coming up.
If you are a CBO and you cannot attend, please send a delegate who can listen, take notes, and report back to your team. Being present matters.
We will cover:
• Leadership Summit details, April 7 to 12
• A new partnership
• A chance to give input on the Summit agenda
• Stakeholder Convening details and expectations
• Nomination and election information, plus candidate remarks
Please check your email for the meeting link from Maria Rivera. If you did not receive it, email mrivera@sicklecellconsortium.org.

02/04/2026

Black history is healthcare history too. ✊🏾

Long before sickle cell disease received national attention, the Black Panther Party were already stepping up for our communities. In the late 1960s and early 1970s, they provided free sickle cell anemia testing through their community health clinics at a time when the medical system largely ignored the disease and many families had little access to information or care.

They educated people about sickle cell trait and disease, connected health to racial justice, and made it clear that neglecting sickle cell was part of a bigger healthcare inequality issue. Their work helped push sickle cell into national awareness and showed that healthcare is a civil rights issue.

Because of efforts like theirs, the foundation was laid for the advocacy, testing, and care our community continues to fight for today.

Black-led movements didn’t just demand freedom. They demanded the right to be tested, treated, and believed. 🩸💛

02/02/2026

In December 2025, we were honored with the Outstanding Service Award by American Society of Hematology. 💜
We were honored to receive this award alongside Sickle Cell Disease Association of America (SCDAA) and Sick Cells. We want to make sure their work is recognized too because this award was shared.
We’ve talked about this moment. Now we finally have the video so you can watch it for yourself.
🎥 Watch the full video here: https://scwarriornetwork.org/video/1969550
One part we really want to discuss is Dr. Bailey’s words about dignity:
“We often find ourselves caught between this decision where we must choose between death and dignity.”
Two questions:
Do you see yourself in that quote?
Have you ever felt like you had to choose between getting care and being treated with respect?
Share what’s true for you in the comments. Let’s talk. 🤍

02/02/2026

SC3 Partner Event Spotlight
We are proud to highlight Through The Pain in collaboration with Praxis Integrated Counseling.
Building Relational Resilience When Chronic Illness Is the Third Wheel is a free 4 week psychoeducational seminar designed to support couples navigating the emotional, physical, and day to day challenges that come with chronic illness.
This series offers practical tools, guided conversations, and a supportive space for couples doing their best to stay connected.
Details
Tuesdays at 7PM EST
Live on Zoom
Starting Tuesday, February 3
Facilitated by Mike Hendricks and Nick Alves
Register here: https://www.throughthepain.org/lovin