We hope summer is going well- that you are finding time to enjoy the long days with family and friends!
This post is to share an event we are tremendously excited about: Ben’s Challenge: Be Warrior! On July 29th, we will be honoring Ben’s warrior spirit by inviting you to Be Warrior too. We will also be raising awareness about Adrenoleukodystrophy and raising money to support the work Dr. Keith Van Haren’s is doing to that end at Stanford University.
Ben’s Challenge will be incredible! Whether you live near Reno or farther away, you can participate in Ben’s Challenge. Ben taught us that we can all do hard things.
It’s easiest to share the introduction from the event page on Facebook (https://www.facebook.com/BensChallenge). Please “Like” the page and tune in for daily posts beginning today, June 29th. The daily posts will share all event details as well as different Be Warrior options and how you can even participate virtually.
Ben was a vibrant, talented and beautiful boy, who was unfortunate to have inherited a terminal genetic disease called X-Linked Adrenoleukodystrophy or ALD. At 8 years old, Ben was diagnosed with Childhood Cerebral ALD. The disease took his eyesight, his gross motor functions, his speech, and ultimately his life at the age of ten and a half.
But Ben was a fortunate boy, too.
Fortunate because within him was the ability to experience life not as a victim, but as a warrior. He called life’s bluff. Despite blindness and failing muscles, he treated his limitations as a series of challenges to be overcome on his way to the adventure, discovery, and the joy that God provided for his time on this earth. He skied and biked, skateboarded and rock climbed, Ben sky dived, parasailed, and went hang gliding. He road tripped the American west on a motorcycle. Ben surfed, ran a half marathon, and tandem cyclocross raced. Ben was an overcomer who lived bravely and did hard things every single day. He faced his hardships and death with dignity.
We can all learn a few things from Ben.
That we’re capable of far more than we give ourselves credit for. That our spirit is strengthened with every challenge faced. That our fears and frustrations can serve as fuel. And finally, that joy is worth fighting for.
In honor of Ben’s memory, we invite you to join us for an epic challenge that will get you well out of your comfort zone, push your limits, and help raise much-needed funding for ALD research.
Stay tuned for details on event specifics tomorrow!