On October 7th, 2018 I am committed to run in my first ever marathon. The 26.2 miles I will be running in Chicago will be the most significant distance I've ever covered on foot in my life. I will not be running for a medal. I will not be running for personal achievement. I will not be running for an awesome instagram post. I will be running for my friend Will and the rest of his amazing Smisloff family.
Will is diagnosed with Cornelia de Lange Syndrome (CdLS) which is a very rare genetic disorder present from birth, but not always diagnosed at birth. CdLS causes a range of physical, cognitive, and medical challenges. Will is able to live with and overcome these challenges through the fierce love and dedication shown by his parents’ Mark and Beth as well as the information and guidance provided by the CdLS Foundation. The CdLS Foundation is a family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lives.
The Smisloff family has been like a second family to me for a big part of my life. Anyone that has met them knows they are some of the most warm, welcoming and compassionate people that exist. Through their inclusiveness I have been able to experience their unparalleled love and devotion for Will. Through Will I have been able to gain a new understanding of hope, determination, and never giving up. I will be using these invaluable lessons learned from time spent with Will and the Smisloff family as fuel during my runs as well as a reminder that wherever there is a human being, there is an opportunity for kindness.
So please consider supporting my fundraising efforts in hopes of helping those living with CdLS and their families. Any amount can make a huge difference. Thanks!
For more information visit http://www.cdlsusa.org/