2 min read

The problem with "raising awareness" on Rare Disease Day (or any day)

I wrote the above on Typeshare yesterday, which also posts to Twitter and Medium. I also downloaded the JPEG and posted it to Facebook.

Of course, someone on Facebook chimed in with an opinion. (I've got to get off that app).

This friend was upset that she can't give blood and help because she was in Britain during the 1970s.

It sucks for those of us exposed when we want to help because of stupid Mad Cows over 40 years ago.

I'm sorry you can't help (by donating blood) because of "stupid mad cows over 40 years ago." Just poured my heart out about losing three family members to genetic CJD and you're sad you can't give blood... 🙄

This is the Problem with "Raising Awareness"

It becomes a constant state of "raising awareness" and nothing ever gets done. The issue isn't advanced, a cure isn't found, the clinical diagnosis isn't happening—and people still don't comprehend it.

I've been doing this for 17 years.

And people still associate this with "mad cow disease." It's still more about the cows than the people all these years later. People have forgotten about the Oprah Winfrey portion of the disaster. No one is even aware of what the U.S. government did to Creekstone Farms and how high this beef farmer went up the chain just to have the right to test all their cows for BSE. (They didn't win that).

It's such a complicated issue...and people still see it as "mad cow disease" and think they are entitled to donate blood. This is a dear friend, BTW. I'm not mad, I'm just used to this.

Raise Funds, Not Awareness

Money may not buy a cure, but it's important so that the work can keep going. Prion disease has been on this planet for 250+ years. As one of the ugliest diseases out there, people tend to look away. It's a coping mechanism, just like how people call wars and pandemics "psyops."

I've learned over the years to not care about people's weird takes and opinions; it doesn't affect my work.

My work is to go to UCSF and do the research. UCSF can always use funds. I can only hope that fantastic scientists will follow in the footsteps of Dr. Geschwind once he retires. By me doing the research, I mean I offer my body (and brain, upon death) to the university to be studied.

This is what I can do.

This is what I can control. I can do my part, I can donate some funds, and I can share my story. But I'm not ignorant enough to expect people to understand my story.

CJD has never been the big, sexy story and never will be. It elicits pity over empathy.

I'm not here to beg and plead for you to understand it. Just support me on my research journey. Write a check. You don't have to watch me die of this—which is a 50/50 possibility. I'm not here to "raise awareness." I'm here to do the work.