Cure ARS

🏅 The medals are here… and they’re waiting for YOU. 🏅

Two weeks to go until Run4Rare 2026 and we couldn’t be more excited! 💚

Every step you take, every mile you run or walk, helps bring us closer to treatments for mitochondrial disease—and supports kids like Aubrie who inspire this mission every single day.

These medals represent more than just crossing a finish line… they represent hope, strength, and a community coming together for something bigger.

✨ Don’t miss your chance to be part of it! ✨

📅 Date: May 16, 2026
⏰ Time: 9:30 AM
📍 Location: Duke Island Park, Bridgewater, NJ

🔗 Register here: https://www.curears.org/run-4-rare-2026

Come run, walk, or cheer us on—and help us Run4Rare 💚

StrongerTogether

So many of our ARS families have stepped up in an incredible way by participating in the National Institutes of Health MINI Study—and this recently published eye movement research is a powerful example of why that participation matters.

The study takes a closer look at how eye movements can serve as measurable, objective markers of neurological function in individuals with mitochondrial disease, including those with ARS-related conditions. While it may seem like a small detail, eye movement is actually a highly precise window into how the brain is functioning. Subtle differences in tracking, coordination, and response times can reveal patterns that help researchers better understand disease progression.

What’s so important here is that these types of biomarkers—like eye movement data—can:
• Help define clinical endpoints for future trials
• Provide quantifiable ways to track disease over time
• Support earlier and more accurate diagnosis
• Ultimately accelerate the path toward treatments

This doesn’t happen without you. Every appointment, every test, every moment spent participating in studies like MINI contributes to something much bigger—a foundation of data that researchers can build on to move our entire community forward.

To our families: thank you for showing up, for saying yes, and for being such a critical part of advancing science. This is exactly how progress happens.

We are launching a BioBank Registry in collaboration with COMBINEDBrain. As part of this initiative, we will begin collecting blood samples and skin biopsies, which will be made available to researchers around the world.

All samples and data will be fully de-identified to ensure privacy and confidentiality—no personal identifying information will be shared.

This first-of-its-kind effort represents an exciting step forward, and we are thrilled to expand our research footprint to advance understanding and discovery across all MTARS genes.

In addition, Combined Brain will be hosting a series of roadshow events (as seen in the attached images). You can let us know if you are able to attend one of these events to have your samples collected in person. Couriers will cover the costs; however, reservations must be made in advance.

Please let us know if you are able to stop by one of these events—we would love to see you there.

Here’s to learning more about ARS conditions.