MEEI has posted a patient whose story was shared at a fundraising gala held earlier this month: (read the article before watching the video as there is a warning about noise) https://focus.masseyeandear.org/hyperacusis-normal-everyday-sounds-painful/ Sharing this on-line might help increase visibility of the story.
(And here is information about the gala http://www.masseyeandear.org/sense-ation Looks like they raised $1.2 million.)
(And here is information about the gala http://www.masseyeandear.org/sense-ation Looks like they raised $1.2 million.)