I tend to manage bad news better. Bad news means I need to take action, to fix it, to help, to cook, to bake, to comfort, to process…….

Good news means I just get to revel. Soak. Just let it sink in. I’m trying to soak.

Today I got a text from our dear scientist at Children’s. I have been waiting for this text. I have texted her about this text. We have been waiting, waiting, waiting to hear about an NIH grant that would change the future of our clinic in Colorado. Our initial scores were good, everything looked great, now we wait.

I am such a bad waiter. I want to know now.

Today my wait was over.

We got the grant from the NIH.

A grant that will secure the future of the clinic, a grant that will allow the super smart people who work there to advance research. A grant that says, “Hey Colorado, it’s the NIH. You all have been doing some great things out West based on some money raised with a bike ride. Here’s a chunk more. Now don’t spend it all in one place. And since we are the National Institute of Health, if you come back with solid data, there’s more where that came from.”

Well that just dills my pickle šŸ™‚

Because we did not just stumble on this grant. The very best thing about where we are today is that we have all arrived together. Our patient group raised money. We climbed that stupid Vail pass, our hineys pissed and gasping for air.

Every year enough money to keep things going and research moving forward.

Our doctors, lordy….we have a great team of scientists; a group that has worked together for years. They understand each other and where they want to be. They know our families. We are so grateful to them and them to us.

It is magic. This. In the midst of this god-awful tragic disease, we have created something unique, respectful and magical.

We have created something even more rare than a POLG-1 mutation. See what I did there? Genetic joke.

Nice job dear tribe. Keep fighting the good fight.

2 thoughts on “Euphoric”

  1. I could listen to you tell POLG-1 jokes all day long. Your daughter’s legacy continues to inspire on a national level.


    1. So great news, holds out hope for treatment and even cure? Better if we could prevent. Thanks for your tire-less effort (you know bikes).


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