Archive for March, 2015

Page 1 of 2

Update by Katie and Megan Nuffer

March 25, 2015 4:01 pm

5

Katie’s update: STRESSED Stress. Have you ever been under so much stress it’s all you think about? Have you ever cried yourself to sleep multiple times a week,...

Continue Reading

Sarah and Remie Ellett

March 23, 2015 10:35 pm

6

“…our baby will be so tiny & small, having her mom’s beautiful feature. Totally in love with her I’ll fall, she’ll be the most beautiful creature…she’ll have small...

Continue Reading

Update on Harlie Valdez today…

March 23, 2015 9:06 pm

12

I was just sitting down to call Stephanie today to find out how Harlie was doing.  Thank you for all of your comments on RUN as well as...

Continue Reading

We are now able to file the 501(c)(3) application! Brian, thank you for your gift to our organization!

March 18, 2015 6:43 pm

5

Dear RUN families, Due to the generosity of Brian Villers, Justin’s childhood friend, we were able to afford the $850 application fee to file the 501(c)(3) this past...

Continue Reading

Insurance company approves WES analysis for Oskar. Lucy Denied. Gina Denied.

March 16, 2015 11:53 pm

3

Our insurance company just approved the WES (whole exome sequencing) analysis for Oskar. Great news! Thank you!!! However, they DENIED the WES analysis for both Lucy and Gina....

Continue Reading

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