The Atypical HUS Foundation

January 2014 Blog Posts (8)

Quicker Genetic Testing

I saw online a couple days ago that there is a genetic test for aHUS in Wisconsin that only takes 28 days. It took mine over 3 months to be completed. However, mine still didn't give us an answer, since my aHUS was one that hasn't been identified yet. Hopefully this helps someone that is looking for a quicker way to get genetic testing done.

Added by Lisa Stockdale on January 31, 2014 at 10:52pm — 7 Comments

Australian submission for approval of Eculizumab/Soliris for aHUS

FYI, Upon request of Kerri Gray, I have just submitted The Foundation for Children with Atypical HUS's plea to the Australian Department of Health/PBAC to approve Eculizumab, (Soliris) for use in aHUS patients. The Foundation passionately supports Austra and other countries battling to have their case made before their governments. Praying for a unanimous selection of Soliris as the current Gold Standard in treating aHUS.…

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Added by Cheryl Biermann on January 31, 2014 at 4:54pm — 1 Comment

THE Best REFERENCE "Book" of aHUS FACTS

 
A MUST - READ for aHUS patients, families, and Caregivers !
 
     Heavy on medical facts and rich with resources to delve into, the National Institutes of Health's GeneReviews  TM is your most…
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Added by Linda Burke on January 22, 2014 at 11:28pm — No Comments

I hesitate to post this update, but maybe it has new information for someone else

Since about August, Nathan has had an elevated creatnine, with the hot, humid Missouri weather, of course we wondered if this was due to insufficient fluids, over the months this issue has not gone away and sometimes his creatnine spiked at pretty high levels.  The theories were, insufficient fluid, so we made sure to increase his fluid at school, he was to visit the nurse three times a day to refill his water bottle, we watched at home and tried to be diligent without sending him into a…

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Added by Cheryl Biermann on January 21, 2014 at 5:26pm — 1 Comment

Our cross country travels for aHUS diagnosis help

Hello everyone, I finally had a free minute and wanted to say hello to everyone. I hope your Holidays were blessed and uneventful.....

 

Since my last frantic posting (right after diagnosis) we have been to Chicago IL, San Diego CA, Iowa City IA, and Columbus OH.

We met some awesome families, patients, care givers, physicians, nurses etc. in Chicago and San Diego, and met the amazing Dr.Carla Nester and her nurse Monica at the University of Iowa, and the renowned Dr.…

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Added by Kris Carrender on January 21, 2014 at 3:07pm — 3 Comments

My Heart is Heavily Burdened

Today I am appealing to you urgently for prayer. Today I am writing to tell you a story.  A story of Bianca Scott of Australia.  Two days I have know of her existence.  In that time, I have posted her story of FB, signed her petition to her government to approve Soliris and tonight been shocked to see a post from her mother stating she has taken a turn for the worse.  In December, Bianca, like many other girls in Australia, was enjoying a formal dance.  Sometime since then, she became sick…

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Added by Cheryl Biermann on January 10, 2014 at 10:24pm — 2 Comments

Kidney Camp 2014 - New York

Announcing Kidney Camp 2014 at Frost Valley YMCA in New York!

 

In partnership with the Ruth Gottscho Kidney Foundation and Children’s Hospital at Montefiore, Frost Valley YMCA invites…

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Added by Linda Burke on January 8, 2014 at 11:50am — No Comments

On Twitter? Enter to win $1,000 for our Foundation from Jet Blue!

Here's the tweet with the rules:

@JetBlue: Chip away at your cause & tweet us to win $1,000 for your charity by using #ICHIPINFOR by 1/20! Terms apply. http://t.co/FG8iM5oDFa

Here's an example (my tweet:):

@DanaSimone1: .@JetBlue #ICHIPINFOR @AtypicalHUS, an extremely rare blood disease that damages kidneys and other vital organs, affects kids, has no cure

Good luck to us!

Added by Dana M Simone on January 3, 2014 at 4:07pm — No Comments

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