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Sickle Cell News
Welcome to the winter (almost spring!) edition of our Sickle Cell newsletter. This month, we’re sharing a story that highlights the strength of a sickle cell community member, upcoming training and events, as well as publications and ongoing work being done to improve care, awareness, and quality of life for individuals and families affected by sickle cell disease.
This month, we are honored to highlight the story of a sickle cell warrior and her experience with gene therapy.
 Nineteen-year-old Virnetra Brown has spent much of her life navigating the challenges of sickle cell disease, including frequent hospitalizations, missed school, and the emotional toll of feeling different from her peers. Through pain crises and integrative medicine treatments, she leaned on strong family support, especially from her mother, Delois McGee, and developed coping strategies like prayer and affirmations.
When her health declined, Virnetra chose to pursue gene therapy. The process included chemotherapy and recovery, which brought major physical changes and emotional challenges. She especially struggled with feeling a loss of control over her body, but with time she adjusted and began to heal. Today, she has a new outlook on life.
When asked about post-gene therapy life and future aspirations, Virnetra shared, “Before gene therapy, I didn’t really have many big dreams, as sickle cell would always find a way to hold me back, but gene therapy has given me so many new opportunities.” After treatment, she is exploring those opportunities, including pursuing training in phlebotomy and dreams of working in healthcare to give back to others.
Congress passed a package of bills providing funding for government programs for fiscal year 2026, which runs through Sept. 30, 2026. This includes:
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$8.205 million for the Health Resources and Services Administration’s (HRSA) Sickle Cell Disease Treatment Demonstration Program.
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$7 million for HRSA’s Sickle Cell Disease Newborn Screening Follow Up Program.
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$6 million for the Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection Program.
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5-year extension of the Sickle Cell Research, Surveillance, Prevention and Treatment Act.
- Accelerating Kids’ Access to Care Act to streamline out-of-state care for kids with complex conditions.
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Upcoming Trainings and Webinars
2026 SCD Policy Forum
Sick Cells, in partnership with the Sickle Cell Community Consortium, will host the 2026 SCD Policy Forum. This virtual, two-day convening is designed to educate, equip, and prepare advocates to engage directly with their legislators on key sickle cell disease policy priorities and recommendations.
Participants will receive policy education, strengthen their advocacy and storytelling skills, and engage directly with their federal representatives during a live Virtual Hill Day session. We aim to have representation from as many states as possible this year to ensure a strong, unified national voice for the sickle cell community.
Register here for the March 17-18 Policy Forum.
The 20th Annual Sickle Cell Disease Research and Educational Symposium & The 49th National Sickle Cell Disease Scientific Meeting
This hybrid meeting brings together researchers, physicians, clinicians, nurses, Sickle Cell Warriors, health care professionals, and the wider community to advance sickle cell disease (SCD) research, treatment and awareness. The 2026 Symposium marks a historic milestone: the 20th anniversary of the Symposium, celebrated under the inspiring theme “The Golden Age.” For those interested in attending in-person, the meeting will be health at the Greater Fort Lauderdale Broward County Convention Center in Fort Lauderdale, Florida.
Register here for the June 5-7 hybrid meeting.
STORM TeleECHO
STORM TeleECHO will empower health care providers to develop the skills, knowledge, and confidence to manage pediatric and adult patients with sickle cell disease using evidence-based best practices.
Register here for upcoming STORM sessions.
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American Society of Hematology (ASH) Sickle Cell Disease Coalition
- The Sickle Cell Disease Coalition is composed of public health, research, and provider organizations, patient groups, faith-based organizations, federal agencies, industry representatives, and foundations with an interest in sickle cell disease.
The Sickle Cell Disease Association of America (SCDAA)
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SCDAA advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.
- SCDAA and Forma Therapeutics produced an impactful PSA that shows what SCD crises look like so more people can take action. Watch the Believe It PSA video.
National Alliance of Sickle Cell Centers (NASCC)
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NASCC’s mission is to support sickle cell disease centers in delivering high-quality comprehensive care by setting standards, promoting their adoption, identifying opportunities and resources to strengthen those centers, and advocating for access to comprehensive care to improve health outcomes, quality of life, and survival.
National Marrow Donor Program (NMDP)
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NMDP is available to support sickle cell warriors on their journey by providing resources, support, and treatment options including access to world-class cellular therapies.
SCDAA and MedicAlert Program
- During a sickle cell pain crisis, time is of the essence. SCDAA and MedicAlert have launched a pilot program designed to improve the emergency room experience for sickle cell warriors. Learn more about the program and how to get involved.
SCD and Social Security Disability
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