Our Purpose Empower Parents To Direct Care

The “System” Labels and then Cattle Chutes  families with a “zero” chance of survival at diagnosis

The only option for treatment is the Standard of Care (SOC aka Sorry; Outta Cures); which doesn’t Cure & only occasionally extends life

Clinical trials are not an option until SOC is completed or in other words; until after SOC Fails

Parents are NOT encouraged or empowered to take risks with limited and  undocumented  “reasons”  not  to

Navigating the Care Team is difficult without clear roles & responsibilities  documentation

Empower Parents to Direct Care by Taking Charge and inform them how to Navigate the “System” and talk about the stuff that the Clinician’s & Resources don’t want you to know

Phase 1

• Connect with Parents to Share Experiences and “What to Look For’s”
• Creation of An Inclusive Resource Library of “What to Look for & How To’s”

Phase 2

• Produce a Comprehensive Roles and Responsibilities “Care Team” Chart to Help Parents Know “Where To Go” and “How to Contact”
• Expansion of Resource Library “What to Look for & How To’s”

Phase 3

• Recruit Sponsors & Resources to Broaden Our Reach and Create Positive Impact for More Families
• Develop Family Forums & Social Support Groups for Identified Resource Gaps