Our 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 new 501(c)(3) non-profit, we are looking to get off the ground by raising $50,000. The majority of the funds collected will be donated to organizations that are deeply involved in researching, treating, and curing genetic diseases.
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.