FAQ / Sharing & getting involved
Sharing & getting involved
What should I post to help share Drake and Vivian's story?
The best posts are simple, honest, and in your own voice. Here's a framework that works:
Who: "Drake (10) and Vivian (7) are a brother and sister from South Carolina who both have NKH, a rare genetic disorder with no approved treatment for its root cause." What: "Their family is raising the final funds for a one-dose gene therapy trial planned for late 2026." Why you: one sentence about why their story matters to you. Ask: "Would you share or give?" plus the GoFundMe link or a link to this site.
Photos and short videos get much more attention than text alone. You're welcome to use images from our press kit, credited to the Drake Rayden Foundation. Mentioning the current amount left, from the latest weekly update, adds urgency.
A few things to avoid: please don't describe the gene therapy as a guaranteed cure (it's a potentially curative, first-in-human trial), and please don't share medical details beyond what the family has made public.
Find ready-to-post captions and graphics on the share page.
Give
Cover an inch of the trial
Every $1,000 covers one inch of the trial. $252,210 to go.
Share
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One post can reach the person who covers the rest. It costs nothing and takes ten seconds.
More ways to share