Archive for the ‘Uncategorized’ Category
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Watch the #UndiagnosedDay Presentation by Ava Zanik (Szajnuk), Undiagnosed Rare Advocate
“Imagine that you only get three years of good health and they are the three years you don’t really remember because you were too young.” – Ava Szajnuk...
Asia Skye Atwater
Hi. my name is Alicia Atwater and I’m fundraising for my niece Asia Atwater’s funeral expenses. Fundraiser for Season Atwater by Alicia Simons Atwater : Asia Skye Atwater...
Searching for a Diagnosis by Daniel Levine
April 21, 2022 Many people living with a rare and undiagnosed disease face a prolonged diagnostic odyssey that can be financially and emotionally taxing as they seek to...
A mother’s unrelenting crusade to help those trapped in the wilderness of the undiagnosed
Gina Szajnuk’s kids suffer from undiagnosed disease; so does she. She is determined to find answers, and help By Lee Benson March 5, 2022 5:42 p.m. MST A mother’s unrelenting...
Ava’s Shuntversary
Today is Ava’s Shuntversary, also known as the day that Ava received the shunt that has kept her alive for seven years. She was born on June 4th,...
Fox 13 News Utah: Undiagnosed Rare Disease Day
“You have to keep fighting for an answer. You have to keep fighting for a cure.” – Ava Szajnuk Thank you to Fox 13 News for raising awareness...
In Honor of #UndiagnosedDay: “Push Through” by Ava Szajnuk
Hi. My name is Ava Szajnuk. Thank you for joining us today to learn about what it is like to live with a rare or undiagnosed disease. I...
Utah HB435 Passed The House of Representatives!
Update: Senator David Buxton is supporting HB435 in the Senate March 5th, 2019 at 7:30p UPDATE: HB435, Undiagnosed Children Insurance Coverage, passed the Utah House of Representatives unanimously...
HB211: Rare Disease Advisory Council did not pass this year.
March 16th, 2019: As the Utah 2019 Legislative Session wraps up, we have reason to celebrate, and reason to keep hard at work. HB211, the proposal for a...
Goodbye Steve. Fly High!
Today is Stephen “Steve” Mark Trummer’s Celebration of Life. He was born on January 15th, 1957. He died on February 4th, 2019. I cannot believe you are really...