Hello everyone!
Thank you for taking a moment to check out this page.
Many of you, I suppose, know this kid - it’s Lorelei aka Lolo. She’s bright, funny, sweet, and cool as hell! If you know her, you’ll know she loves hiking, rainbows, Beethoven, rocks, sticks, and swimming. She is someone who enriches the lives of all those she meets!
What you may not know is that this incredible kid has a rare genetic disease called FOXP1 Syndrome.
What’s that, you ask?
Well, simply put, it’s a mutation of the FOXP1 gene. But let me lay some very basic groundwork..
We all have 4 bases that make up our DNA - Adenine, Cytosine, Guanine, Thymine - A C G T. Where a typically developing person would have a G in this particular section of their sequence, Lo has an A. And that quirky little A is responsible for ALL SORTS OF THINGS!! Autism, ADD/ADHD, gastrourinary abnormalities, intellectual deficits, mobility struggles, speech delays and issues, eye and vision problems, low muscle tone, posture issues and a lot more… so, kind of a lot.
As far as where this mutation came from, that’s an interesting one!
FOXP1 is what’s called a “de novo mutation” meaning, a new variant. Neither her dad nor I carry the gene and it’s just something that happens sometimes, albeit quite rarely as only about 200 - 300 people are recorded to have this syndrome, though the true number is likely much higher.
As we raise awareness and funding for research, and as genetic testing becomes more readily available and accessible to all families, we will likely see this number grow.
There’s no “cure” or anything, but knowing does provide some answers and gives us something to point at and say, “ok so this is why..”
Most importantly though, we’ve been given a community of families and researchers that support each other and make us not feel so completely alone.
Now that we have the basics out of the way, let me tell you about what I hope to accomplish with this fundraiser.
For starters, I enjoy running long distances. And while slow and never in the running for podiums, I’m not terrible at it.
That being said, there’s a pretty spectacular challenge happening this year called the Lone Star Slam of Ultrarunning - the goal is to finish ALL 6 of the 100 mile races put on in Texas over the course of 29 weeks.
Why do something like this?
Well, not only is it something I love to do, the patience, grit, and determination it takes to complete a challenge like this so closely mirrors what we do everyday as parents of special needs kids that it’s scary. The tears, the laughs, the failures, the triumphs, the struggles, setbacks, and of course the small wins.. It’s all there on the trail. Those long miles shove your nose in the brutal truth that life is hard and sometimes the only thing you can do is stop hiding, cry, and take it one very literal step at a time.
Finally, what I ask of you fine people is to sponsor a mile for $1.
It’s not a fortune I’m trying to raise, but if I can get every mile of this challenge sponsored for $1, that’ll be $600 going toward research and support for families with FOX kids. I will also be personally matching this $600 donation.
Even if you don’t sponsor for $1, I hope you’ve learned a little something about FOXP1 syndrome and will help spread the word. These kids and families are something special and they deserve to be seen, heard, and supported.
Again, thank you for taking the time to read through all this. Now let’s do the thing!
Love y’all!
Kat
Race Schedule:
8/24-25/24 - Habanero Hundred 100
10/25-27/24 - Cactus Rose 100
11/23-24/24 - Dinosaur Valley 100
12/7-8/24 - Brazos Bend 100
2/1-2/25 - Rocky Raccoon 100
3/15-16/25 - Grasslands 100
FOXP1 Foundation
Lone Star Slam of Ultrarunning
guidestar.org/profile/85-4079051