Cure Kinley and Kennedy

Our ALTEN Technology colleague in Denver, Kyle Harrison, has two (of four) young daughters with an extremely rare disease, GM1 Gangliosidosis, that’s fatal and will likely take their lives by the time they are teenagers. But first, it will rob them of their ability to walk, talk, eat, and even smile. They found out this horrible news the day after their third daughter was born.

Unfortunately, because this is such a rare disease, there’s very little awareness and funding available to help fight it like other, more well-known, diseases. Kyle and his family are constantly trying to raise awareness and money to help advance the research and clinical trials, in hopes to save the lives of their daughters and every other child affected by this awful disease.

Kyle’s family is hosting a Cure Kinley and Kennedy charity golf tournament on 7/22 in Denver. I will be attending to volunteer and would love to surprise them with a monetary donation to the cause from his fellow colleagues in all our US offices. My ultimate goal of course is to fund the cause with as much money as possible, but it’s also to simply show Kyle compassion and support from the community within his work home that he enjoys so much. Sometimes, just knowing that others are aware of what you’re going through and are supportive can be helpful amidst the daily battles.

Currently, there is no approved treatment or cure for GM1, and it is always fatal in children.