I’ve waited 19 years for THIS: We Are Beginning to Talk About THE CURE. It’s HAPPENING!

Stay with me on this, because the way this came to my attention was…full of synchronicity.

I was talking to someone from UCSF to plan my next trip there, hung up, and this was published. It came to me about 4 hours later. Talk about a God wink…

But on that call, the discussion had changed. We talked about the cure, treatments, strategy, new information, and different tests than before…

These were things we weren’t talking about 12 years ago, that’s for sure.

I started this blog 11 years ago (after the original one I started in 2005). I felt then like I had to kick and scream and fight for this day to come. I also felt it would never arrive. I did have hope. I just didn’t want to kid myself that I would ever live to see this day.

And here it is. Onward. 🫡

There’s so much to say after what I’ve witnessed over the past 20 years since my mom became ill and I just don’t know where to begin.

The past nine days since this story came out have been a watershed moment in my life. I truly lived the past two decades as though I were going to die of this too, just to put things in proper perspective. It’s the framework from which I made choices and decisions. I regret none of those.

This does change life going forward. For all of us. The best part?

Most of the world doesn’t even know or realize it. I always hoped it would be exactly this way. 😊

The article from Science talks about the heroes of this field, the possible treatments, and quotes the heavy hitters. The notable takeaways are sprinkled throughout. It’s no exaggeration to say that I sobbed through reading it and needed the past 9 days since to process what this means for me, you, and the world.

The fact that a cure for prion disease may also eliminate Alzheimer’s and ALS was always possible and probable. It was always discussed. But to be one step closer… I am humbled.

There were times over the years that I consciously chose to walk away, to not dive too deep. I’ve never been to a family conference, for example.

I chose not to make this my life—a decision I also don’t regret.

Some did choose to devote their lives to this, and I have nothing but respect for them as they are saving all our lives. I will die on my hill about how prion disease is not rare. I do not support the CJD Foundation; I only support the CURE. (Please donate to the UCSF Memory & Aging Center or Prion Alliance if you donate).

I want you to put your money toward the CURE, not anything else.

Lives have always been on the line and far too many have suffered. We don’t need to raise awareness and all that treading water kind of stuff. Let’s finish this. The cure for CJD will lead to other cures. This is what’s important.

Let’s do the maximum amount of good now that we’re on the right track.

I will return to UCSF and take notes. I am also looking forward to the rest of my life.