I run so Reyna & others with rare disorders can run!

Hi, I'm Sumanta Goswami, and I'm running so Reyna—and thousands of others impacted by rare genetic conditions—can one day run too. Will you join me on this journey?

My dear friends Shruti & Jainu welcomed their beautiful daughter, Reyna, into the world in 2017 after a full-term, healthy pregnancy. Everything seemed perfect—until, just 20 days later, they noticed unusual hand and eye movements. After an exhausting journey through tests and hospital visits, they received a devastating diagnosis: CDKL5 Deficiency Disorder, a rare and severe genetic condition that currently has no cure. This disorder is not hereditary—it was the first time anyone in their family had ever heard of CDKL5. They were completely at a loss for what to do next, overwhelmed by the uncertainty and lack of answers.

CDKL5 causes early-onset, drug-resistant seizures, severe developmental delays, and profound disability. But there is real hope: the pre-clinical work for a CDKL5 gene therapy has already been completed with promising results. The next critical step is launching a Phase 1 clinical trial, and that requires significant funding. Your support will help cover the essential costs to bring this therapy into its first-in-human trial—bringing us closer to a cure.

Here's the reality: there are over 8,000 rare genetic conditions, yet fewer than 5% have approved treatments. Clinical work will also help support gene therapy programs for conditions like GNAO1 and others, which similarly lack viable treatment options.

Your donation will directly support these urgent gene therapy initiatives. Let’s give kids like Reyna a real chance at life. Please consider donating, running, and sharing—to help make the impossible possible.

Join us. Run with us. Share our story. Donate. And help us bring hope to those who need it most.