Parent Advisory Board


We are thrilled to announce we are working on new initiatives for the OCNDS community. We are forming our inaugural Parent Advisory Board. We are looking for caregivers or parents who want to get more involved. This is an exciting opportunity for parents or caregivers of an OCNDS patient to make a difference in the lives of those affected by OCNDS. Parent Advisory Board will advise our Board of Directors, brainstorm ideas and share insights from the parent perspective related to OCNDS.


  • For inaugural group, 1 year commitment with one year option to extend
  • Meeting Virtual Calls - 1 hour per month
  • 5 hours a month minimum for PAB projects
  • Two 2-hour virtual trainings (spread out between two months)

Applications are due May 15, 2020.


Timeline For Parent Advisory Board:

  • April 15: Communication outreach by CSNK2A1 team begins to recruit applicants
  • May 15: Semi-finalists are chosen, and Ostrea Consulting (“OC”) interviews conducted
  • June 15: Finalists chosen by OC and CSNK2A1 leadership and notified. Contract to be signed and countersigned by first video training.
  • Week of June 29: Video Training #1 by OC
  • Week of July 13: Video Training #2 by OC
  • August 1: Program launches publicly, first official PAB video meeting this week
  • October 1: Ostrea Consulting transfers management to CSNK2A1 leadership