Cure ARS

05/14/2026

A huge thank you to Aubrie’s Dammie, Debbie Rowland for being a Platinum Sponsor for Run4Rare 2026! 💜💛💚

Debbie has always been one of Aubrie’s biggest supporters and biggest cheerleaders. From helping behind the scenes to supporting our mission year after year, we are so grateful for her love, encouragement, and dedication to helping families impacted by mitochondrial disease.

Sponsors like Debbie help make Run4Rare possible and help fund critical research, awareness, and support for the mitoARS community through CureARS.

🏃‍♀️✨ ONLY 2 DAYS UNTIL THE RUN! ✨🏃‍♂️
We can’t wait to see everyone at Duke Island Park for a fun morning supporting rare disease families!

📍 Duke Island Park, Bridgewater, NJ
📅 May 16, 2026
⏰ Race starts at 9:30 AM

There’s still time to register!
🌐 https://www.curears.org/run-4-rare-2026

05/10/2026

💙 Happy Mother’s Day from CureARS 💙

Today, we honor the incredible mothers in our ARS community—the women who show up every single day with strength, resilience, and unwavering love.

You are caregivers.
You are advocates.
You are fighters.
You are the heartbeat of this community.

Behind every appointment, every sleepless night, every moment spent pushing for answers—you are making a difference. Your courage fuels progress. Your voice drives change. Your love carries your families through what most could never imagine.

At CureARS, we see you. We stand with you. And we are committed to fighting alongside you for a future filled with hope, treatments, and cures.

Today—and every day—we celebrate you. 💙

05/02/2026

🏅 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

04/19/2026

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.

04/14/2026

Eva Bensasson and CureARS are working on a potential collaboration with a TechBio group in Cambridge, England, to better understand why people with the same ARS gene can have very different experiences – sometimes even within the same family.

Many of you have shared that no two children are the same, and in some cases things don’t follow what doctors might expect. We’re trying to capture those patterns more clearly to help guide a potential research project.

We’ve put together a short survey (about 5 minutes) to gather community insight. This includes space for individuals and families at all stages, including those who have lost a child, if you feel comfortable sharing.

Please can you help by filling in the survey? You don’t need to have all the answers – even partial information is incredibly helpful.

https://forms.gle/QD1eLWbPLZrnwuSg8

Thank you for helping move this forward 💚

We are working to better understand how mitochondrial ARS conditions affect individuals differently — even within the same family. As part of a new project, we are exploring a collaboration with a research team focused on understanding why people with the same genetic variants can have very differ...

04/08/2026

🏃‍♀️ Don’t Miss Your Shirt! Register by April 15th! 👕

Time is running out to secure your official Run4Rare 2026 race shirt! Register by April 15th to guarantee yours and be part of this meaningful day supporting rare disease research.

Join us for the 5th Annual Run4Rare 5K / 1K, a family-friendly event benefiting research for mitochondrial ARS diseases and supporting affected families—held in honor of Aubrie.

🎽 Shirts, race bibs, finisher medals & family fun activities included!

Event Details:
📅 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 and help us make a difference. Every step brings us closer to treatments for rare mitochondrial disease 💚

04/01/2026

In February, a group of students—primarily at the high school level—presented an abstract at the Rady Children’s Health & UC Irvine Rare Disease Symposium & Family Conference. We are incredibly proud of their dedication to studying the 19 mtARS genes over the past few years, and we look forward to seeing the impact they will make in the future of science.

04/01/2026

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.

03/31/2026

💎 Thank You to One of Aubrie’s Biggest Supporters 💎

We are incredibly grateful to Aubrie’s grandmother for once again being a Run4Rare Diamond Sponsor 💚

Her continued support means so much—not only to Aubrie, but to our entire CureARS community. She is one of Aubrie’s biggest champions, always showing up with love, encouragement, and unwavering belief in our mission to find treatments for mitochondrial disease.

✨ Want to get involved?
Sponsorship isn’t just for businesses—individuals and families can sponsor too! Every contribution helps make a meaningful impact.

🔗 Become a sponsor: https://www.curears.org/sponsorship

🏃‍♀️ Don’t forget to register for Run4Rare and join us on race day!

Thank you for helping us move closer to a cure 💚

03/20/2026

🏃‍♀️ Run4Rare 2026 Shirt Reveal! 💚

We’re so excited to share this year’s Run4Rare race shirt design—created to represent strength, movement, and the mission that brings us all together: funding research for rare mitochondrial disease.

👕 Important Reminder: Register by April 15th to guarantee your official 2026 Run4Rare shirt!

🎽 All registered participants will receive:

• Race shirt
• Bib
• Finisher medal
• Access to a fun, family-friendly event day

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

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

Whether you run, walk, or cheer from the sidelines, you are part of something bigger—helping drive change for rare disease.

💚 Join us. Support the mission. Run4Rare.