We work with so many amazing causes!
Ticketbud to efficiently sell tickets online on a smart budget, and we are thrilled everyday when we learn about our new users. One particular event caught our Director of Marketing's eye when we saw them sign up. He called them immediately to hear more about who they are and what they are doing.
The organization is called Hope For NKH and the President is Sarah Harris, a strong, friendly and determined woman. She lost her son, Joseph Anthony and daughter, Sophia Grace to the disorder at 9 days and 5 days old.
Non-Ketotic Hyperglycinemia (NKH) is also known as glycine encephalopathy (GCE) which varies in severity. NKH is a metabolic disorder, and most babies born with this disorder die shortly after birth. At birth NKH babies look like any other healthy baby, but days later they go through a period of lethargy, very weak or no cry, loss of muscle tone, little to no sucking reflex, and constant seizure activity and/or myoclonic jerks, which can lead to death. When a child survives they are faced with varying degrees of mental retardation.
The disorder affects 1 in 60,000 newborns, and currently there is only one doctor researching and actively on the forefront of finding treatment and most importantly, a cure. Sarah informed us that only one known researcher, Dr. Johan Van Hove, is dedicated to spending the rest of his career working on this disorder, but he needs $70,000 in outside funding a year to be able to progress his research. Sarah and Hope for NKH are more than focused to make that progression a reality.
John spent a good while on the phone with Sarah discussing the obstacles of a young organization tackling a horrible disorder that has an impact on a small percentage of families. John mentioned that, "It was amazing to hear about a disorder that I sadly had no knowledge of. As a philanthropist, I could have stayed on the phone for hours discussing strategies to assist Sarah and her team. I advised on several media-outreach tactics they should approach and look forward to hearing about their development. Ticketbud is helping a lot of great causes bring in proceeds they deserve, and organizations like Hope For NKH are what keep me working beyond my fathomed capabilities. I will remain a supporter and advocate for disorders like NKH."
Their organization is throwing their first Annual Auction using Ticketbud to sell the tickets online. We are wishing them all the best and encourage you to check out their event page and assist with the incredible work they are doing.
Below is a flyer from a past event that was put on by a supporter and associated organization called NKH Crusaders.
Thanks to Sarah and Hope For NKH for choosing Ticketbud. We are with you in the fight...]]]]> ]]>
