james Reti

Dear friends, family, and community,

My friends Anna and Michael with their beloved daughter Adeline carry more courage in their hearts than I’ve ever seen. At nearly five years old, Adeline has never experienced a seizure‑free day. Since that terrifying moment two weeks after birth, she’s lived with relentless, refractory epilepsy, severe seizures that defy treatment. She cannot sit, stand, walk, talk, or use her hands. Her vision is silenced by cortical visual impairment, and she needs loving care for every action, every breath, every moment.

Adeline lives with CDKL5 deficiency disorder (CDD), one of the most devastating forms of genetic epilepsy. It arises from a spontaneous mutation affecting a gene crucial for brain and neuron development. There is no cure, but there is hope.   

In 2023, I took on the “100 Skips a Day in August” challenge and raised $5,000 for the Children’s Medical Research Institute (CMRI). Now, in 2025, I’m skipping again, committed to honoring every precious moment Adeline has and supporting cutting‑edge gene therapy research that could change the future for children with CDD.  

While treatments like ganaxolone offer symptomatic relief, and are now FDA and EMA approved (since March 2022 and July 2023), true cures remain in development. Preclinical work on gene replacement therapies (such as Ultragenyx’s UX055 and others) shows encouraging early results, but clinical trials may still be years away.   

Every skip you make, every share, every dollar donated brings us one step closer. Even if Adeline may not yet benefit directly in her lifetime, there’s a chance that another child tomorrow will. That possibility alone is worth everything.

Join me this August!

Skip 100 times a day. Share our story. Donate what you can.

No gesture is too small. Your support gives Adeline, and all children like her, a fighting chance. From Anna, from Michael, from Adeline, from all of us: thank you for your support, thank you for believing in hope.