Every June for CDKL5 Awareness month, Frank and I come up with a physical challenge to help spread awareness about our daughters rare epileptic genetic disorder. This year, instead of doing our challenge in June, we have decided to join Tough Ruck Nation in April to complete the 26. 2 miles throughout Boston. We will be raising funds throughout the year up until our race day. What better way to start fundraising than on Giving Tuesday! We hope that you can help us find a cure and better treatments for our daughter and her CDKL5 brothers and sisters. I will be documenting my training throughout the year during these next months leading up to the race.

This April, Frank and I will be joining Tough Ruck Nation to complete a marathon with a 35lb rucksack (backpack) and additional weight carrying hydration and food. Tough Ruck 26.2 Boston is an elite group of 1000 who ruck to HONOR AMERICA'S FALLEN MILITARY & FIRST RESPONDERS. If you would like to donate to our Tough Ruck page to support the Tough Ruck charity for Military and First Responder families you can do so by copying and pasting the link here: https://runsignup.com/rally4rian

The mission of the IFCR is to treat and cure CDKL5 Deficiency Disorder. We are committed to funding research that will bring about treatments and, ultimately, a cure. We strive to raise awareness of this rare disorder and, above all, we seek to support all CDKL5 families by providing the most current information on treatment advances and resources for how to live their best life possible. We are a parent-led, volunteer organization. Our budget comes primarily from the fundraising efforts of our CDKL5 community. Thank you for your support!