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
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
- 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
- Video: tell the story of a KIF1A patient who was misdiagnosed with CP
- SEO: link CP and KIF1A in search engines
- 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?