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
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
- 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
- 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
- Expand and promote resource page on the website with links to
- 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?