The Atypical HUS Foundation

February 2012 Blog Posts (8)

Feb 29th is Rare Disease Day

It's international Rare Disease Day!
 
The Foundation for Children with Atypical HUS is raising awareness for the over 300 million people worldwide affected with a rare disorder, with aHUS patients and their families participating in various activities.
 
View some great videos as patients and families share their stories our dedicated aHUS…
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Added by Linda Burke on February 29, 2012 at 1:41am — 4 Comments

SOARING VOICES - Great Entries!

Rare Disease Day is fast approaching - this Wednesday, Feb 29th!  From the lush scenery in a UK entry to the cute faces of our adorable aHUS children to the moving stories represented in the slideshows of our adult patients - you have painted a visual picture of hope in the face of challenging circumstances.

Please double- check here http://www.youtube.com/user/aHUSrarediseaseday to make sure that…

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Added by Linda Burke on February 28, 2012 at 1:32am — No Comments

Biopsy update and 4th Annual Hike for Hyde

Hi everyone, you might have thought I forgot about you for the biopsy result but we've been going back and forth with the dr's while they mull over how to handle the biopsy results. It wasn't horrible but it definitely wasn't the best news either - the pathology report showed 'borderline acute rejection'. I know this sounds alot like the first biopsy he had back in August - but that one actually said that it might be the result of a poor sample, and it was…

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Added by Phyllis Ann Talbot on February 20, 2012 at 9:30am — 3 Comments

U of Iowa's 2011 aHUS Family Conference Video Posted

     Talk about a wonderful Valentine's present for the world's aHUS community - comprehensive video presentations about atypical HUS!  The University of Iowa has robust patient and research programs that provide cutting edge information and services to aHUS patients and their families (see The University of Iowa Children's Hospital http://www.uihealthcare.org/PediatricKidneyDisorders/).  At an October 2011…

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Added by Linda Burke on February 14, 2012 at 2:00pm — 1 Comment

Soaring Voices - A RESOURCE LIST for Creating your Video!

2017 Rare Disease Day - 28 February
Update:  We'd still love to see YOUR aHUS Journey on YouTube…

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Added by Linda Burke on February 6, 2012 at 11:00pm — No Comments

Hi all, sorry ive been a little scarce lately, life has just been so unbelievably busy!!! Ash is continuing to do well although we have had a couple of admissions in the last 2 months just for temps …

Hi all,

sorry ive been a little scarce lately, life has just been so unbelievably busy!!! Ash is continuing to do well although we have had a couple of admissions in the last 2 months just for temps and to receive IV anti's til negative cultures come back for line infections/meningicoccal etc!!!

On the home front 8 days ago on the 28th of January we welcomed our 5th child into our family - a little boy named Oliver (Ollie).  Unfortunately i ended up having an emergency…

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Added by Kerri Grey on February 5, 2012 at 12:03am — 4 Comments

Home (for now) and happy Kidneversary!

Hi all - let me start by saying this isn't exactly how I imagined writing this update - I'd been planning my big Kidneversary update in my mind for the last couple of weeks and as usual - Hyde had other plans!

On the short term front - yes we are home. The feeling for now is that Hyde's mouth sores were due to the medicine change, and he also got hit around the same time with some type of nasty virus causing the high fever and diarrhea. He's been fever free…

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Added by Phyllis Ann Talbot on February 1, 2012 at 7:11pm — 4 Comments

Pictures of AHUS kiddos PLEASE

Hi Everyone,

 

I'm working on a new video to promote the Hike for Hyde, and had an idea to incorporate not just photos of Hyde and Bryan, but photos of as many kids as I can get to help show all the kids that the fundraiser benefits.  If anyone would be willing to send me pictures to include in my video (slide show presentation), please send me a message through this site, and I'll message you back with an email address where you can email your photos. 

 

I would…

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Added by Melissa Hearn on February 1, 2012 at 4:30pm — 8 Comments

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IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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