MISHA Foundation

index

1 min read

Families

The community arm. Per 7-foundation playbook (CureSHANK, Sophie’s Hope, STXBP1): patient/parent community is the gravity well that keeps the foundation honest and well-prioritized.

Mandate

  • Connect STRC / DFNB16 families globally
  • Provide support resources (newly-diagnosed packets, decision frameworks, peer-parent introductions)
  • Channel family input into program priorities (research direction, registry design, advocacy)
  • Coordinate with FDA Patient-Focused Drug Development and analogous Asian regulatory engagement

Year 1 activities

  • Family-onboarding packet — documents/templates/family-onboarding-packet.md
  • “Newly diagnosed” guide on wiki — first major content milestone
  • Quarterly virtual family call (Zoom) — once 5+ families enrolled
  • 1:1 with each enrolled family during onboarding

Year 2+ activities

  • Annual in-person family meetup (HK or rotating)
  • Family ambassadors program (PI + family liaison pairs)
  • FDA / NMPA Patient-Focused Drug Development meeting participation

Distinction from Patient Registry

  • Registry = data infrastructure (audiograms, natural history, IRB-approved structured records)
  • Families = relationships, support, advocacy (qualitative, community-driven)

Both programs cooperate but they’re separate operational arms.

Year 1 KRs

  • KR1: Newly-diagnosed guide published on wiki (Month 6)
  • KR2: 5+ enrolled families have had founder 1:1 (Month 9)
  • KR3: First quarterly family call held (Month 12)

Connections

1 item under this folder.