Run Casey Run!
Casey will be doing A LOT of inspired running in some really hard trail races this year. The first will be a 50 mile race in April followed by a 100 mile race in the Colorado Rockies in August! The purpose is to increase awareness of rare genetic diseases and the struggles that families face on a daily basis. Additionally, we will be raising money in support of organizations who are making advancements in gene therapies.
It's going to be hard
These races will be hard, but they don't compare to the mountain a family has to climb when they have a special needs loved one that will require lifelong care.
Our five year old daughter, Clara, has a genetic disease so rare that it doesn't even have a name. She is one of a few hundred people in the world identified as having a mutation (or "change") on her STXBP1 gene. As a result, she will have lifelong physical and intellectual disabilities. Clara is a gift and has taught us more than we could have ever imagined about what it means to live joyfully, celebrate life's small victories, and love those around you. We owe her, and others who are impacted by gene changes, the chance to live their very best life - and in many cases save their life. If gene therapy and other genetic breakthroughs can do this, then let's start putting one foot in front of the other!
We need your help
As a brand new 501(c)(3) non-profit, we are looking to get off the ground by raising $50,000 over the next six months just in time for the gun to go off at the start line of the Leadville 100 Trail Race on August 17th! The majority of the funds collected will be donated to organizations that are deeply involved in genetic research and testing. We will also be supporting the STXBP1 foundation as they drive research and support families navigating this journey. We can't do it alone, so here is how you can help:
Support Casey with a donation to help him stay motivated when the inevitable going will get tough during these races. It's been widely reported that 50% of the participants in the Leadville 100 do not finish the race within the 30 hour time limit!
Or participate in an event yourself and fundraise for us! Remember, this all started as a way for Clara to inspire YOU. We will make the process easy for you and hook you up with some sweet Clara Inspired gear. If this is the route you plan to take, send us a message and we will get you started!
Our goal is to cure genetic diseases within our children's lifetime. That's a long time and seems really hard, right? That's exactly the point. Together, we can do hard things.