Emmy's Rustic Run

✨HAPPY NEW YEAR, RUSTIC RUNNERS!! ✨ Two really exciting things happened last month and we are eager to share them with you:

#1: EMMY TURNED 13! 🎉 We officially have a teenager and we celebrated the big day with three of her favorite things: skipping school, capybaras, and Chick-Fil-A! ❤️

#2: We received the following email just a few short days before Christmas from the founder of the A-T Children's Project. Researchers have learned more about the ATM gene and a protein that the gene regulates (called GRP94) and how it affects the body. Their research suggests that "blocking GRP94 at the cell surface reverses many of these abnormalities, even when ATM itself is absent" and that "it provides a concrete, mechanistic explanation for several A-T features that DNA damage alone cannot fully explain, and it opens a new, potentially druggable path for life-improving therapies."

Much more research is still needed on the subject but, thanks to YOUR support, that research is happening, new things are being learned about A-T, and new pathways to cures are being explored! THANK YOU for believing in our cause and for continuing to bring us HOPE for a cure!

We wish you a happy and healthy 2026 and look forward to announcing more info about our 10th Annual Rustic Run in the coming months! ❤️

GIVING TUESDAY is here again and the Ataxia-Telangiectasia A-T Children's Project has an anonymous donor that is matching up to $50,000 in donations this week! 🤯❤️ There are so many good people in this world doing incredibly generous things and we’re thankful for those who choose to direct that kindness towards kids like Emmy! 🥰

❤️Give Twice the Hope to A-T Families This Giving Tuesday with a $50,000 Match!

This Giving Tuesday, you can double your impact for children and young adults with ataxia-telangiectasia (A-T). A generous anonymous donor has offered a $50,000 matching challenge, which means every gift you make between now and Friday, December 5th will go twice as far!

And, at a moment like this, we can’t afford to slow down!

This year feels like a true turning point for A-T research with several international clinical trials wrapping up and results expected in the next few months. And, with your support, we’ve launched and funded multiple gene therapy and gene editing projects — harnessing breakthrough genetic, neuroscience and AI technologies that didn’t exist even a few years ago. Right now, researchers are collaborating more closely than ever, building the tools, models, and data needed to move therapies forward at a fast pace.

The A-T Children’s Project is working with teams across the globe, attacking A-T from every angle — replacing or correcting the ATM gene, calming inflammation in the brain, improving mitochondrial function, protecting fragile neurons, strengthening the immune system, and supporting families day to day. Each strategy gives us another opportunity to change the future for A-T kids. Together, these strategies represent an unprecedented push toward life-improving therapies. You can read more about these approaches here.

Every dollar you give will be matched up to $50,000! Your support will lead to continued breakthroughs and will accelerate promising projects. And, it will bring us closer to treatments for every child and young adult living with A-T.

Thank you for making a difference and for giving hope to the entire A-T community!

❤️Give Today. Be Part of the Match. Be Part of the Cure.
Donate today at atcp.org/givingtuesday
⁠

Emmy is officially on the last 4 weeks of her 24-week clinical trial! Unfortunately we have not seen much of a change even after switching at the halfway point. We think she may currently be taking the actual drug (not the placebo) but it’s hard to tell if the medication is truly making any difference. She seems to have slightly more energy at the end of long school days but her coordination has not made any notable improvements and she has also struggled more to fall asleep at night since switching over in October.

Emmy was offered the chance to continue the trial (open-label) for another year while the researchers continue to study its effects but when we asked what she wanted to do, she said, “I’d rather be tired than have to keep drinking this medicine and orange juice every day.”

By our counts, Emmy has taken 560 doses of medication and consumed 6 gallons of orange juice since starting the trial back in July… and she doesn’t even like juice! 🥴 She has been a trooper throughout this whole process and while we are disappointed that the medication hasn’t seemed to help her much, we are grateful for the opportunity to give it a try. For now, we’ll finish out the last 4 weeks of this trial and hope and pray for another opportunity on the horizon.

Trials like these are made possible by people like you and events like ours. Thank you, Rustic Runners, for all that you do to support our girl and A-T research!

It’s hard to believe “Rustic Run Eve” is upon us again! Tomorrow will mark the 9th year of hosting our little trail run but more importantly it will mark another amazing year of this community coming together to support and bring hope to our family and to all families with children who are struggling with A-T. Emmy’s disease has taken so much from her at such a young age but it has also given us an incredible opportunity to come together and fight for something we believe in: finding a cure for A-T!

We’ll never be able to thank our sponsors, volunteers, or participants enough for all that you do but we hope to give you another unforgettably fun day tomorrow to show our appreciation.

Registration booth opens at 8am and 5k kicks off at 9am!

Whether you’re coming to run or coming for the fun: we’ll be here and ready for you! Food, fun, and friends await… so get some sleep and we’ll see you in the morning!

Goodnight, Rustic Runners! 🍂