Recent Posts

Page 43 of 49

National Ability Center: From the Desk of the Executive Director, Ms. Gail Loveland

March 16, 2015 10:38 pm

2

What an honor to be in their newsletter. We truly feel blessed to have found the National Ability Center and all of the wonderful people there. We look...

Continue Reading

Harlie Valdez is not doing well. Please pray.

March 14, 2015 7:19 pm

26

I have been blessed to meet the most amazing rare children as well as their strong mothers and fathers. No one can truly understand what they go through...

Continue Reading

The loss of Christina “Tina” Tournant

March 14, 2015 5:18 pm

5

I read the post from the Dysautonomia Advocacy Foundation on Facebook earlier this week. It stopped my heart for a second. Christina “Tina” Tournant took her own life due...

Continue Reading

A diagnosis is not coming any time soon for the Szajnuks. Not for Ava, Oskar and Lucy. Not for me.

March 10, 2015 5:38 pm

2

I met with my specialists for yet another round of appointments over the past week. There are still no answers for me. I had a few more diagnostic...

Continue Reading

Please Register and Vote! Wearable Devices, Precision Medicine and Temperature Regulation

March 6, 2015 10:55 pm

1

PLEASE REGISTER AND VOTE! THIS COULD HELP OUR FAMILY!! http://markhoffmankc.com/wearable-devices-precision-medicine-and-temperature-regulation/ Wearable Devices, Precision Medicine and Temperature Regulation This entry was posted in #Research#ResearchImprovesLives#ResearchSavesLives on March 6, 2015 by Mark...

Continue Reading

Utah Rare’s 2015 Rare Disease Day Symposium. Rare families. The heartbreaking stories from yesterday…

March 2, 2015 12:00 am

3

I felt honored to be a part of the Utah Rare’s 2015 Rare Disease Day Symposium. It will be a day that I will never forget. Not only...

Continue Reading

Utah’s Rare Disease Inaugural Symposium: Speech by Gina and Justin

February 28, 2015 7:15 pm

0

LIVING IN A DIAGNOSTIC ODYSSEY, TIMES FOUR Good afternoon. My name is Gina Szajnuk and this is my husband Justin Zanik. We have three undiagnosed children. Ava, is...

Continue Reading

Utah Rare Disease Day 2015 Events start tomorrow! Have you registered?

February 26, 2015 10:03 pm

1

UTAHRARE.org Events Friday, February 27th 2015: Rare Disease Day State House Event 3:00pm – 5:00pm State Capitol Building, Rotunda 350 North State Street, Salt Lake City, UT 84114 Utah...

Continue Reading

Three children getting scoped on the same day. What were we thinking?!

February 26, 2015 9:41 pm

2

We left the house at 5:30a this morning and headed to the hospital. Ava, Oskar and Lucy were scheduled to be scoped.  It is exhausting going through this...

Continue Reading

Katie blogs about meeting Harlie

February 26, 2015 9:18 pm

2

It warms my heart to see how strong Harlie is. She’s the sweetest girl I’ve ever met and is such an inspiration to me, and many others. I...

Continue Reading