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Knowledge Changes
Everything
Plain-language education and support to help warriors, caregivers, and families understand sickle cell disease and make informed decisions.
Why Education Matters
When you understand your condition, treatment options, and rights, you can advocate for yourself and make decisions with confidence. We believe everyone deserves access to clear, accurate information—not medical jargon.
Medical Jargon is Overwhelming
Doctors use complex terms that are hard to understand. You need clear, plain-language information to make informed decisions about your health and treatment.
Gene Therapy is New and Confusing
Curative treatments are now available, but understanding eligibility, risks, and what to expect is complicated. You need guidance from people who get it.
Misinformation is Everywhere
Not all information online is accurate or relevant to your situation. We provide evidence-based education you can trust.
You Need to Advocate for Yourself
Navigating healthcare systems, schools, and workplaces requires knowledge. We equip you with information and tools to speak up for what you need.
What We Offer
Comprehensive education services designed to meet you where you are, whether you're newly diagnosed or navigating gene therapy decisions.
One-on-One Education Sessions
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Free, confidential consultations with trained educators
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Personalized explanations of your diagnosis and test results
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Help understanding treatment options and making decisions
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Virtual or in-person meetings based on your preference
Gene Therapy Decision Support
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Comprehensive education about FDA-approved gene therapies
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Eligibility assessment and treatment center connections
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Help weighing risks, benefits, and personal circumstances
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Connection with others who have been through gene therapy
Plain-Language Resources
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Downloadable guides covering sickle cell basics to advanced topics
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Worksheets for tracking symptoms and managing health
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Letter templates for school and workplace accommodations
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Emergency care plans and crisis management resources
Educational Workshops
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Monthly workshops on key topics (pain management, gene therapy, trait, etc.)
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Guest speakers including doctors, researchers, and warriors
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Q&A sessions with medical experts
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Virtual attendance options for accessibility
Life After Cure Support
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Guidance for navigating post-treatment recovery
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Emotional support for the identity shifts that come with being cured
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Connection with others who have completed gene therapy
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Resources for managing long-term health after cure
School & Workplace Advocacy
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504 Plan and IEP assistance for students
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ADA accommodation letters for employers
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Training for schools and workplaces on sickle cell needs
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Advocacy support when accommodations are denied
Video Library
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Educational videos covering key sickle cell topics
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Recorded workshops and presentations
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Patient stories and testimonials
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Accessible, watch-at-your-own-pace learning
Referrals & Connections
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Connection to specialists and treatment centers
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Referrals to genetic counselors
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Links to clinical trials and research opportunities
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Navigation help for complex healthcare systems
Ready to Get Support?
You don't have to do this alone. Reach out today and let us walk beside you.