As parents, all we want is for our kids to be happy and healthy. Unfortunately, that is not always how things turn out. My name is Mayra and I have three beautiful children. My oldest is 18, my middle child is 14, and my...
When my fourth child was born, a beautiful little girl named Felicity, I thought our family was complete. I had 4 beautiful children, a loving husband, and a happy successful life. I soon realized there was something amiss. My fairytale turned into every parent's worst...
I am Troy Evans. An undiagnosed male from Utah. I consider myself a “neuromuscular disease fighter” and that word, “fight” crosses my mind many times per day. As I’ll explain later, this unknown enemy has wiped out most of my leg muscles. It’s also allowed me to...
/*! elementor - v3.10.2 - 29-01-2023 */ .elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img[src$=".svg"]{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block} Aldis Hodge was recently quoted as saying, “What makes a superhero? They’re supposed to represent hope, opportunity, and strength for everybody.” As a mom, I find this statement a true reflection on my Cooper and...
I prefer to start my story from the end, because who doesn’t like a happy ending. Right? Or at least an ending in which the bad guy doesn’t win. I enjoy life with my service dog Sophie, spending winters in tropical Colombia and summers on...
When people meet our daughter Kaci, they politely ask, “What is her diagnosis?”. I always respond with “Well, that is a really good question that we do not have an answer to”. I then proceed to spew off some of her main challenges, such as...
By Adaline Dunnberg | December 22, 2022Thanks to the tireless efforts of patient advocates and legislators, funding for the Undiagnosed Diseases Network (UDN) will continue through 2023. On December 22, 2022, Congress passed a spending bill for 2023 that includes $18M to fund the UDN,...
By Troy Evans | October 5, 2022 Autumn is already here (or finally here, I guess, if you’re one of those who prefers it above all other seasons) and work for UDN sustainability continues by so many wonderful people. Many things, including legislative advocacy efforts,...