Every June for CDKL5 Awareness month, Frank and I come up with a physical challenge to help spread awareness about our daughter’s rare epileptic genetic disorder. This year, instead of doing our challenge in June, we decided to join Tough Ruck Nation in April and COMPLETED the 26. 2 miles throughout Boston.

This April, Frank and I JOINED Tough Ruck Nation and completed a marathon with a 35lb ( more like 50 lbs) 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!

LETS CONTINUE TO MOVE THOSE MILES!!!!!

Hope Love Cure