My dear friend John Baley and I will be competing in a Half Iron Man in just under a month! We’re using this challenge to fundraise for an organization whose cause is very near and dear to both our hearts: The Genesis Foundation for Children. The Genesis Foundation provides assistance for clinical and therapeutic programs for children born with physical and intellectual challenges and rare genetic disorders.
Please click here to support Ryan and John by donating to The Genesis Foundation.
The Why: Ryan
“How shameful and absurd it is for the spirit to surrender when the body is able to fight on!”
-Marcus Aurelius
I don’t really know how or why I decided to attempt something as ridiculous as an Iron Man. It started as a way for me to prove that my self-limiting beliefs were wrong, and has evolved (thanks to gentle nudging from my slightly insane friend John) into an opportunity to raise awareness for a cause that is very near to my heart: Rare genetic disorders, and the families of those who are diagnosed with them.
My entire life has been plagued by medical complications and physical setbacks. I’ve had more surgeries, casts, crutches, torn ligaments, and health scares than I can possibly count In the spring of 2021, I had a near death experience in the form of an aortic dissection and subsequent emergency open heart surgery. After extensive testing and genetic screening, I was finally diagnosed with VEDS: an extremely rare and poorly understood genetic disorder that is likely the root cause of almost every medical emergency I’ve ever experienced.
My diagnosis left me with extraordinary fear about the future, and I felt utterly trapped by circumstances beyond my control. I was horribly out of shape, could hardly walk up a flight of stairs without having to catch my breath, and my spirit was essentially broken as I wallowed in a daily cycle of addiction and self-defeat. Today, I am blessed to have a community that loved me back to life and taught me that lost dreams can awaken; one day and one choice at a time, I have worked towards this goal. My hope is that someone hears my experience and sees that change IS possible. We do not have to be trapped by our fears, and we do not have to face them alone.
My diagnosis doesn’t greatly impact my day to day existence these days, but so so so many families struggle to cope with the financial, spiritual, and practical hurdles that come with children and loved ones who have been diagnosed with rare genetic conditions. With this in mind, please consider supporting both myself and John by contributing to the Genesis Foundation and wish us luck in October!!
Thanks and love you all!
The Why: John
“If there is a hard, high wall and an egg that breaks against it, no matter how right the wall or how wrong the egg, I will stand on the side of the egg. Why? Because each of us is an egg, a unique soul enclosed in a fragile egg. Each of us is confronting a high wall. The high wall is the system which forces us to do the things we would not ordinarily see fit to do as individuals.”~Haruki Murakami
Growing up I never was any good at sitting still, which earned me my fair share of dirty looks, demerits and diagnostic labels, none of which stuck. I always loved to run but as I grew older I started spending most of my time staying out late making questionable decisions. I started running as an adult in Black Mountain in 2007, shortly after setting down several bad habits. I run like I do most things; too much, too hard, and too often. That, combined with a total lack of natural talent, led me to ultra distance races, which led to the triathlon. In my real life I’m a runner, a person in recovery, a father, and a husband. When I’m not too busy taking care of what really matters, I practice as a lawyer and a clinical psychologist in the greater Asheville area.
In my practice as a psychologist, I work with pediatric patients with rare genetic disorders. In my work as an attorney, I advocate for children and adults whose differences require accomodation from educational, professional, and living situations which often mandatory to provide under federal law. Like many of my clients, I have often had the experience of not fitting in, of being the answer to the question “which one is different and does not belong.” I am grateful beyond measure for the support I have recieved which has enabled me to become both a part of society and a part of the solution as an advocate and, when necessary, a litigant. My heart is forever with those who are different, who feel as though they may not belong. Please join us in supporting them by supporting the work of The Genesis Foundation.
Please click here to support Ryan and John by donating to The Genesis Foundation.