Archive for December, 2015
Rachel Nielson’s update
So this happened!?? Quick update: I’m going into surgery tomorrow to get a J tube placed into my stomach. It’ll be like my NJ except instead of going...
Ava Szajnuk shares a video of her journey
Ava Szajnuk was asked by her 2nd grade teacher to share something about herself instead of bringing a present to her classmates. Ava wanted to share a video...
Hailey Sampsel admitted again. Discharged again. Still no answers and no end in sight.
Amy Sampsel: “Bad week. Really BAD week. And the week before this one. Was even worse. On Monday, December 7th, Hailey’s head pain was absolutely horrible. So, she...
Sen. Hatch and Sen. Klobuchar Become Senate Co-Chairs of Rare Disease Congressional Caucus
FOR IMMEDIATE RELEASE December 16, 2015 Media Contacts: Matt Whitlock (Hatch): 202-228-0210 Colin Milligan (Klobuchar): 202-228-6317 Sen. Hatch and Sen. Klobuchar Become Senate Co-Chairs of Rare Disease Congressional Caucus WASHINGTON—Sen....
Grayson McClure. Denied again. Someone please help me!?!
Kay McClure: Well…Merry Christmas to us again. Not really!?! Grayson was turned down for the 4th time from an undiagnosed program. Again, Grayson didn’t “fit” their program and should be...
RARE Teen Photo Project Sponsored by Aware of Angels, RUN and Utah Rare!
Season Atwater, Aware of Angels, will be the photographer of an extremely special project. We are looking for 10 RARE teenagers, between the ages of 13 years old and...
Hailey Sampsel shares about her 15th birthday
November 22nd: Yesterday was my 15th birthday. I’ve been dreading that day for awhile now because it’s a reminder of how long I’ve been sick. Last year, I...
Not cool to Bully a Rare kid
Harlie Valdez received the following text last night from a teenage boy. “I hope you don’t get better. I hope you get sicker. It was better when you...
Amazon Smile: Please donate to the Rare and Undiagnosed Network this Holiday season!
RUN is FINALLY starting to solicit for funds! We need your help to keep RUN going in 2016! We have big things planned already! I love all of...
Dear Healthcare Professional by Melissa Nearman
Dear Healthcare Professional, Please understand that coming to the emergency room was my last resort. I can guarantee I tried to talk my way out of being brought...