I made a petition on the White House site. Once I realized there wasn't one. I'd loved to have put A LOT more, but sadly it only gives you 800 characters :(. So this is the best I could come up with in 800 characters.
https://petitions.whitehouse.gov/petition/chiari-malformation-and-related-disorders-spread-education-research-and-awareness/PdWkjVcl