Hi! This post is by Casey's mom, Chris Duane. First off, I thank each of you who have made a donation to our Foundation through our Go-Fund-Me page. Every dollar counts and as you read on, you'll understand why.
As you may or may not know, I have spearheaded the formation of the Foundation for Casey's Cure, Inc. I proudly announced in June, 2019, that I was going to raise the money needed to get someone to work on Casey's defective gene. Period. And I wouldn't take or think for one moment that it wasn't attainable.
I mean, sure, I'd never raised $350,000 before, but hey! Just because I haven't done it, doesn't mean that I can't!
You know how a dog has that adorable way of cocking her head at you? And you'd swear that she was asking, "What? What does that mean?"
Well, I don't have to explain to you that when humans do that to each other... well... that's what so many people have done when I announced that I was going to find a cure for Casey. They'd cock their head, tap my arm, and say what a strong and determined woman I was... but the truth was, they didn't think there was a snowball's chance in hell that I would succeed.
And they weren't the only ones who were doubters, but...
There was no way would I be persuaded that this was a ludicrous idea.
First, not-for-profit charitable foundations have pretty strict IRS guidelines. So I hired a lawyer who specializes in charitable work. (She works out of Nevada and Georgia. In this day and age, distance is of almost no matter. ) We received our 501(c)3 designation letter in March, 2020, retroactive to the Foundation's commencement date of August, 2019.
While we were waiting, I also knew we'd need a Board of Directors, and the ones at the top of my list were my daughter-in-law's parents. That we have been fortunate enough to a family member with strong ties to the research community around the US...well, I can't even begin to tell you what it was like when I received the email from him that said he had found a group of researchers at the University of Missouri who have spent the last 25 years working and researching how the TTN (pronounced tie-tin) gene.
For background, the TTN gene is the longest protein chain in the body and for some reason, finding researchers working on that chain was... disappointing, to say the least. When this family member put out Casey's information to his community, TWO groups of researchers popped up! After explaining the medical details of her genetic testing, these researchers are anxious to get to work on Casey's Cure.
But, when our family member came back with the information that two or three sets of researchers are VERY interested in working on Casey's Cure, well, my heart just fell to my stomach... I couldn't believe it. And he closed his email with...."this might not be such a crazy idea after all..."
This is my journey. To find researchers who can dedicate a good portion of their time working on Casey's Gene and to find people who are empathetic enough to make a donation... of any size.
The researchers need $350,000 to begin work. Then... they'll need more, but I like to take on challenges one step at a time...so to $350,000 we go!