When Angela Frazier’s son Joseph (4 years old) was diagnosed with Prader-Willi Syndrome at 2 months, she and her husband JD listened to the geneticist say that their son “would not have much of a life” and refused to believe it. Immediately, Angela set to researching PWS online. She sent an email to a group forum and within hours received an email from Dan Hedstrom with a short list of things to do immediately, first being “call Dr. Miller at University of Florida and then call my wife!”
It turned out the advice she received from Dan, husband to Susan Hedstrom, FPWR’s current Executive Director, would start an incredible journey of friendship, support and community. As a busy mom of four beautiful children, Angela has her hands full but always makes time to spread awareness and fundraise for FPWR’s research programs in her beloved city of Austin, Texas. Over the past several years, she has helped coordinate multiple extremely successful One Small Step events, a national advertisement in Sports Illustrated magazine featuring FPWR and her handsome son Joseph with the St. Louis Cardinals, and she is currently volunteering her professional expertise on the planning committee for the upcoming FPWR research conference in Austin.
Angela shared, “I have only been able to go to one research conference… it was an amazing time to share stories and get recharged. The biggest thing is not feeling alone on this journey. I don’t want any new parent to ever hear their child won’t have a future like we were told, so I make it a point to always reach out and encourage new parents to engage because I know that feeling of fearing the unknown.”
Angela is eager to pay forward the incredible support she and JD have received, “Our families and friends have been amazing though all of this. We have never felt alone, that’s for sure. They have all bent over backwards to help us with Joseph and our three other kids and raise as much funds and awareness as they can for FPWR. We are extremely lucky with all the support we have gotten and feel extremely blessed by it all! I am very excited for Joseph’s future. This has not been an easy road to be on but it has been filled with amazing joy, hope and love…for this I am grateful!”