Of course, I can see why more of us HA people are anxious with it being in the spotlight right now. All of the people who are affected by this disease are coming forward to tell their stories and it makes it seem much more common than it really is. Which is of course going to freak out our community.
BUT, as we all know, being afraid of a disease doesn't mean we're going to get it.
So my solution to help is donate if you can, as one of the sufferers said, this disease isn't incurable - it's drastically underfunded.
Big pharmaceuticals don't make any money funding research into such a rare disease, so it's up to all of us to help where we can. :)