Teresa O'Connell

ZC4H2 Research Foundation: Hope through science

On June 13, 2026, Riley & I will be riding in the  Million Dollar Bike Ride hosted by the Penn Medicine’s Orphan Disease Center as part of Team ZC4H2. This ride is so much more than miles on a bike. It is hope in motion.

Our team rides for children and families (including our Lila) impacted by ZARD (ZC4H2 Associated Rare Disorders), which is an ultra-rare genetic condition with profound neurological and neuromuscular impacts affecting muscle tone, mobility, development, communication, and so many everyday abilities most of us never have to think twice about. For these children, every movement, every milestone, and every small victory represents extraordinary strength and perseverance.

Living with an ultra-rare disorder can feel isolating. Answers are limited. Treatments are scarce. Research is underfunded. We know first hand the reality of this statement as Lila was diagnosed with ZARD at 3 weeks old. Together we can change this story.

We are riding for our Lila & our fighters who work tirelessly to accomplish tasks others take for granted. We are riding for families navigating uncertainty with courage. We are riding for progress, for awareness, and most importantly for a future where therapies and treatments exist.  We are riding for our Lila James, to give her & all other children living with ZARD hope for the future.

Every dollar raised through this ride goes directly to the ZC4H2 Research Foundation, funding critical research that moves us closer to understanding this disorder and developing meaningful interventions. To make your impact even greater, the foundation is matching donations up to $15,000 doubling the power of your generosity.

Your support is more than a donation. It is validation for us and all other families who refuse to give up. It is momentum for scientists searching for answers. It is belief in our children whose potential deserves to be fully realized.

If you are able, please consider contributing and sharing this page. Together, we can transform awareness into action and miles into milestones. We can improve the quality of life for Lila & all others impacted by this ultra rare disorder.

Thank you for standing with Team ZC4H2 and for helping turn hope into progress.

With love,

The O’Connell Family

PS - Please check out the Foundation’s video & see our Lila & Corey in action ❤️

To learn more about ZARD, please visit the Foundation’s site at: https://www.zc4h2foundation.org