Help Us Share Good News This Giving Tuesday!

We are participating in this fundraiser as parents whose entire world has been forever changed by a diagnosis—twice. Both of our daughters, Carly (13) and Leah (11), were recently and unexpectedly diagnosed with a telomere biology disorder-Dyskeratosis Congenita.

The past year has brought uncertainty, fear, and countless questions—but also, moments of profound hope. Funding for upcoming clinical trials is one of those moments.

Knowing that someone is fighting for answers, for better options, and for brighter futures for our children means more than words can express, especially for such a rare disease.

Leah is an exceptional athlete who pours her heart into soccer and basketball. Every time she steps onto the field or court, she shines. She dreams of continuing to compete and thrive in sports—something that feels uncertain with this diagnosis.

Carly plays volleyball is a competitive equestrian with a deep love for horses, and her passion has become her anchor. She hopes to stay strong and healthy enough to continue her horse showing.

We are doing everything we can to keep our daughters feeling well, and research gives us something we’ve been desperate for—real, tangible hope.

Thank you for your support. When my girls were first diagnosed and we were told there was no cure I couldn’t help but think there is just no cure YET! Every dollar is one step closer to that cure.