October Newsletter (2025)
This month, we remind everyone to join us for the upcoming Therapeutics Conference, announce a few new blogs, and share some conference season wins.
This month, we wrap up Sickle Cell Awareness Month and announce our inaugural Sick Cells Therapeutics conference.
September is Sickle Cell Awareness Month — but our work doesn’t stop here. In this issue, we share Marqus’ powerful call to keep the conversations going all year long; unveil our first ever Sick Cells Therapeutics Conference; offer a toolkit for coping with grief in honor of Grief Awareness Day; plus details on HHS’s upcoming webinar series on gene therapies.
Sick Cells, a national nonprofit dedicated to amplifying the voices of people living with sickle cell disease (SCD), proudly supports the introduction of the Sickle Cell Disease Comprehensive Care Act in the U.S. House of Representatives, introduced by Representatives Danny Davis (D-IL) and Neal Dunn (R-FL).
Sickle Cell Advocates Affirm Support for Drug Development Following the Discontinuation of Pfizer’s THRIVE-131 Trial
This month, we welcome a new team member, Dagmawit, and share about our recent CAC meeting as well as the recently announced list of states participating in the SCD Cell & Gene Therapy Model.
This month, we honor our late warrior Marqus, whose advocacy continues to inspire—five years after his passing, his legacy shines brighter than ever. On World Sickle Cell Day, communities from Michigan to Kenya rallied together to elevate awareness and support for those living with SCD. But there’s urgent work ahead: proposed changes to Medicaid threaten care for more than half of individuals with sickle cell—so we’re calling on grassroots organizations and advocates to join our coalition before July 1. Plus, don’t miss the official Coverage for SCD Summit report, a vital resource spotlighting the evolving landscape of care and coverage.
This month, Sick Cells honors the legacy of board member Dorinda Lawrence-Sims, celebrates the contributions of departing Community Programs Manager Arielle Krahenbuhl, and highlights the organization’s participation in global sickle cell advocacy efforts.
This month, we reflect on the importance of honoring our younger self and understanding how our youth shaped who we are today as we honor two winged warriors.
The SCDC program is in jeopardy. We are asking the SCD community to mobilize and take action.
This month we hosted our Annual SCD Policy Forum with SC3, celebrate Woman’s History Month, and hear from Mariah Scott in a new blog.
This month, we recap our time at Rare Disease Week, congratulate Talana Hughes, and highlight an article by former staff member Mariah Scott.
This month, we kick off the year with opening registration for the 2025 SCD Policy Forum, recapping a Kwanza Celebration, and sharing about a new SCD drama series.