5th Annual Tough Mudder Run for Sarah Kilby


Dear Family and Friends,

5 years ago our firstborn daughter Sarah was diagnosed with Shwachman-Diamond Syndrome. Like most people we had never heard of this disease. To say it changed our lives is an understatement. I won’t go into the details of what this non-curable (right now) syndrome entails but if you want to read up, please read more information on the website.

Sarah is the toughest person I’ve ever met. She has been through hospital stays and procedures no innocent child should have to endure. Sitting at home one day I decided to do something to raise awareness and funds for her illness. My choice was to participate in “probably the toughest event on the planet”.

I figured if she can go through her life with medical challenges, I certainly can push my old body and endure some physical pain for 6 hours one day a year. The first year our good friend Matty Way decided to accompany me up, down, over, under and above Mt. Snow in Vermont. Crossing the finish line was one of the most powerful days of my life. We are now up to the 5th annual run, and “Sarah’s Hitmen” has grown to 15+ of our close friends and family members. On June 6th of this year we will all travel to Mount Snow once more (lots of laughing, some crying) to help raise awareness for Shwachman-Diamond Syndrome. I can’t thank them enough!

The Shwachman-Diamond Syndrome Foundation is a small but extremely dedicated group. This year is my most important fundraising event thus far. SDSF has received 3 letters of intent from researchers, and all are very promising. This research unfortunately costs money. We know this economy continues to be a struggle for everyone, but your tax-exempt donation helps Sarah, and children like her, afflicted with Shwachman-Diamond Syndrome. All donations big and small help fund this research to find a cure.

Sarah started middle school this year, and will be a teenager this September 24th! She is the sweetest girl you can ever meet and I run for her. We want Sarah to live a long, healthy and happy life. We are hoping for a “cure for the future”. This run is for our Sarah.

All our love,

Dan, Kate, Sarah and Leah Kilby