Executive Summary
On May 16, 2014, my daughter Ellie was born. In just the first few moments of her life, we
could tell something was not quite right.
After nearly two months in the hospital, four surgeries, tracheostomy
and feeding tubes, a life-flight, and seemingly hundreds of tests Ellie was
diagnosed with Trisomy 4p (also called 4p+) – a rare chromosomal disorder with
less than 100 documented cases. Our
one-in-a-million baby girl has already overcome painful challenges but will
continue to have medical and mental development problems throughout her
unpredictable life. My wife and I were
able to get in contact with the few other families around the nation that have
children with 4p+ and have decided to start a foundation to raise awareness
about this rare condition. Each of us is
planning on holding a fundraising event for the foundation and we have decided
to hold a “Race 4 Ellie.”
With limited resources to work with, we are not able to hire any outside help to run the event and will rely upon volunteers to run a successful event. To facilitate race registration and volunteer signups I have created a registration form that can be used by our staff to enter in the necessary information for each participant including name, gender, age, contact info, t-shirt size, and more. It also will allow us to gather information on potential donations and create a contact list for future events. This information is then stored in a master spreadsheet. We hope this tool will allow for easy registration and information capture at the Race 4 Ellie!
With limited resources to work with, we are not able to hire any outside help to run the event and will rely upon volunteers to run a successful event. To facilitate race registration and volunteer signups I have created a registration form that can be used by our staff to enter in the necessary information for each participant including name, gender, age, contact info, t-shirt size, and more. It also will allow us to gather information on potential donations and create a contact list for future events. This information is then stored in a master spreadsheet. We hope this tool will allow for easy registration and information capture at the Race 4 Ellie!
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