Prepare
Know the child’s baseline, organize vital information, and understand how to use an individualized plan.
A BlackZiza Partners LLC program
Help sickle cell families prepare for more than the next crisis.
A hospital-ready family education and advocacy program that strengthens emergency preparation, school support, healthcare communication, and the path to independence.
Family-centeredEvidence-informedClinically reviewed before launch
Why this matters
Families manage sickle cell across every part of life.
Pain and illness can change quickly. Families must make decisions at home, communicate during emergency visits, manage missed school, and help a child grow toward adulthood—all while carrying the emotional weight of a complex condition.
Living Forward adds structured, practical family education to the clinical care hospitals already provide.
The program
Protection, preparation, and a life moving forward.
Designed for parents, caregivers, adolescents, and young adults, the program combines plain-language education, lived experience, teach-back, and useful tools families can take home.
Advocate
Communicate clearly with healthcare and school teams and document concerns, decisions, and next steps.
Build independence
Believe symptoms while helping children develop age-appropriate responsibility and self-advocacy.
Eight-module curriculum
Practical education families can use immediately.
Understanding Sickle Cell
Know the condition, the child’s baseline, and the questions to ask.
Pain and Sudden Change
Prepare for urgent situations and communicate changes clearly.
Food Fluids and Routines
Support overall health and plan for difficult days without unsupported claims.
Support Without Limiting
Balance compassion, structure, expectations, and confidence.
School Success
Prepare for health plans, Section 504 discussions, absences, and missed work.
Healthcare Partnership
Organize appointments, discharge information, and care-team questions.
Transition to Adulthood
Build self-management skills for adult care, college, and work.
Advocacy in Action
Create a coordinated 90-day family road map and support network.
For hospital partners
A defined program that complements clinical care.
Hospitals retain control of clinical standards, emergency instructions, referral pathways, privacy requirements, and content approval.
A pilot can include
- Eight 75-minute family sessions
- Parent and Caregiver Handbook
- School advocacy toolkit and meeting letter
- Emergency-information and appointment worksheets
- Pre- and post-program evaluation
- Outcome and participant feedback summary
Recommended first engagement
Eight-Module Hospital Pilot
Designed for 10–20 caregiver households, delivered virtually or on site with a designated hospital clinical liaison.
- Format
- 8 weekly sessions
- Audience
- Families and adolescents
- Review
- Hospital-approved clinical content
Built for responsible partnership
Clear clinical boundaries.
Education, not treatment
The program never diagnoses, changes medication, interprets laboratory results, or replaces individualized medical advice.
Clinical review
Health-related materials and local emergency directions are reviewed by the hospital before launch.
Privacy and dignity
Information collection is limited, family stories require permission, and the hospital’s privacy process governs delivery.
“
Sickle cell disease is part of a child’s life. It should not become the limit placed on that child’s life.
Founded from lived experience
Created by a mother who has walked the journey.
Sylvia Miller-Howell developed Living Forward With Sickle Cell from decades of supporting her daughter with sickle cell anemia into adulthood. Her perspective shapes the program’s focus on early preparation, nutrition and routine support, school advocacy, compassionate expectations, and independence.
Sylvia serves as a lived-experience family educator. Licensed healthcare professionals retain responsibility for medical care and clinical instruction.
Start a conversation
Bring Living Forward to your sickle cell families.
Request a 30-minute conversation about your population, current family-support services, and a hospital pilot.
Prefer email? contact@blackzizapartners.com