The following are group notes gathered from the World Cafe discussions at the 2019 KAND Family & Scientific Engagement Conference. Visit the conference page to learn more and download the “Family Support” session handout with discussion questions here.

2019 KAND Family & Scientific Engagement Conference
World Café: Family Support
Group Notes
August 17, 2019

How can KIF1A.ORG better support newly diagnosed families?


  • Newly Diagnosed Information Packet:
    • Note: some materials should be geared toward the family; others should be geared toward clinicians
    • Support group information
    • Letter for the patient’s clinicians with KAND explanation and care guidelines
    • List of tests that may be considered (e.g. regular EEGs, vision screening, etc.)
    • List of specialists that patients may need on their care team
  • Welcome video with a positive message (this isn’t the end; this is just the beginning)
  • Create an FAQ page

Other Notes

  • Ease families into the diagnosis (e.g., Dr. Chung’s YouTube video is a little too much at first)
  • “Welcome Committee” of multiple volunteer who can be delegated to take point on correspondence/phone calls with newly diagnosed families

How can KIF1A.ORG foster connections between KIF1A families?

  • KIF1A.ORG portal (password protected) for families and caregivers (discussion forum and resources)
  • When first diagnosed, connect family to others in close proximity or families who speak the same language
  • KIF1A Yearbook
  • KIF1A directory (name, location, email, phone number)
    • Attendee directory for future conferences?
  • KIF1A Map: encourage families to add their location and make sure people know where to find it
  • Encourage KIF1A families to make time for each other and to reach out
  • Support between families growing too fast: make sure people are organized with jobs to distribute work
    • Create subcommittees
    • Long-term projects
    • Top priorities

How can KIF1A.ORG help support the wellbeing of the whole family?

Remembering Those We Have Lost

  • Care Package for grieving families
    • Quilt made from patches sent by individual families
    • Volunteers give their time/skill to gifts that help honor the memory of those we lost (e.g. Crafters for KAND group)
  • Hall of Heroes
  • Cards on birthdays and anniversaries to honor those we’ve lost and their families

Other Comments

  • Expand and promote resource page on the website with links to helpful resources
    • What can we do to help families navigate and connect with local resources?
  • Create a children’s book for siblings
  • Sibling support resources
  • Self-care resources

Questions & Comments

  • Need more support for and recognition of adults living with KAND
  • Limitations of Facebook group: not good for large scale communications
    • Group is too big and information is getting lost
    • Info needs to be organized (e.g., a Reddit/Subreddit thread?)
    • Need to be able to search for old info without scrolling
    • A way to connect people        
  • Use e-newsletters from KIF1A.ORG to engage people who don’t use social media
  • We should have more conferences and meet-ups
  • Need to continue raising awareness to find undiagnosed or misdiagnosed patients
    • People who have not had genetic testing, or their testing is incomplete or outdated
    • Cerebral palsy community
  • Should we have local chapters?