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 “Fundraising & Advocacy” session handout with discussion questions here.

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

How can KIF1A.ORG help families engage in local media or other awareness activities?

  • Media Toolkit with talking points, KIF1A.ORG overview for press, personal stories, digital assets and brand guidelines (logo guidelines, color palette)
  • Give families ideas for who/what organizations to contact
  • Recruit volunteer marketing professionals to work on marketing/communication resources
  • Rare Disease Day Toolkit
    • Provide materials to talk to media or drug companies
    • Host lunch and learn at corporation or drug company
  • Tell our story with natural history study/data and personal stories to highlight the rareness of KIF1A and range of symptoms/severity

What resources can KIF1A.ORG provide families to help with local fundraising efforts?

  • Fundraising Toolkit with guidelines, talking points, donation request letter template, etc.
  • Printouts and flyers
  • Create list of fundraising ideas
  • Establish local country affiliates (obtain country-based charity status)

What should we do to celebrate a global KIF1A Day in 2020?

  • Social media campaign
  • Engage corporate/organizational partners/advocates
  • Famous musician donate time for festival or concert?
  • Families can do local awareness (e.g. newspaper articles, interviews) and fundraising events
    • Create a map of local KIF1A events around the world

Advocacy & Fundraising Ideas

Events & Fundraisers

  • Walk, 5k or marathon
  • Some kind of “motor” race or event (play on motor protein)
  • Our mouse needs a Kat campaign
  • KIF1A.ORG merchandise and/or storefront
  • Signature challenge or event: Our version of the Ice Bucket Challenge (fun and easy campaign) or Tim Tebow’s Night to Shine

Donor Engagement

  • Develop corporate sponsorship program
  • Employer matching gifts – families and donors should see if their employer will match their donations to KIF1A.ORG
  • Donor acknowledgment page on KIF1A.ORG
  • Walk into businesses with your child – they would love to help someone local
  • Engage celebrities who “care about rare” or are connected in some way to special needs children, disability, etc.
  • Make fundraising more personal and specific


  • Invite other organizations to help with awareness
  • KIF1A.ORG mascot? (superhero + double helix?)
  • Create an official KIF1A.ORG ribbon, maybe incorporating the DNA double helix?
  • Rare Disease Day: help families do local news stories
  • Advocacy through books: pick a book to gift to children/families and include a note about KIF1A and your child to raise awareness
  • “Is it really cerebral palsy?” campaign to find misdiagnosed KIF1A patients
    • Brochure
    • Video: tell the story of a KIF1A patient who was misdiagnosed with CP
    • SEO: link CP and KIF1A in search engines

Capacity Building      

  • Have a paid position to take this information and make it into something real
  • KIF1A.ORG should pursue development grants for growing nonprofits
  • Create expertise list of family members/volunteers
  • Need a digital space where people can work on projects together that isn’t Facebook


  • How should family members characterize themselves when communicating with the media and/or fundraising? Ambassadors? Representatives? Volunteers?
  • It can be difficult for families to engage in advocacy and fundraising when they already live very busy lives. How can we delegate?
  • Should we engage an outside mentor/consultant because we are all biased?
  • Are we connected with other rare disease nonprofits that would share funds or resources?