The Atypical HUS Foundation

July 2014 Blog Posts (5)

Just curious

About a month ago at a check up with the Nephrologist they decided to put Cole on Ciproflaxin. He takes 4.5 ml once a day everyday and the doctor said he wants him on it from now on. Has anybody else heard of this? Is this a standard precaution?

Added by Alison Montes on July 31, 2014 at 12:19am — 7 Comments

Another commercial for Iowa! Sign up today!

Hi everyone - another quick commercial for Iowa!  Use the link below to reserve your room (Covered by the foundation for both Friday, Oct 24, and Sat, Oct 25)!

https://www.starwoodmeeting.com/StarGroupsWeb/res?id=1406189080&key=8E04DC3

And use the following link to register with Amy Weaver at the University of Iowa for the actual conference:…

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Added by Phyllis Ann Talbot on July 30, 2014 at 4:30pm — No Comments

Looking for aHUS INFO and SUPPORT?

      Come hear an aHUS medical expert offer an overview of the disease, explain complement activation and aHUS, discuss aHUS diagnosis and treatment and MORE!

Check out these aHUS regional meeting dates and locations, and SAVE THE DATE (Oct. 24-26) for the Foundation’s MegaMeeting with our aHUS research partners at the University of Iowa!

 

August 22-23: …

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Added by Linda Burke on July 27, 2014 at 4:14pm — No Comments

RareConnect aHUS WEBINAR with Dr. T Goodship, July 31st

     Join the global aHUS conversation at a July 31st webinar hosted by RareConnect.org and featuring Dr. Tim Goodship.  As an international leader in aHUS research based in England,  Dr. Goodship will discuss key issues facing people living with atypical hemolytic uremic syndrome.

RareConnect, a joint partnership between NORD and EURORDIS, offers a webpage dedicated to aHUS concerns and…

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Added by Linda Burke on July 22, 2014 at 9:00pm — No Comments

Is There an App for That?

CLICK HERE

     Patients, caregivers, and family members face many challenges in the face of a rare disease diagnosis.  Sometimes it can feel like a triple whammy – the diagnosis of serious illness, difficulty finding information about a rare disease, and the impact of treatment, schedules, and emotional stress on the entire family. Wouldn’t it be nice to find some applications for…

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Added by Linda Burke on July 13, 2014 at 6:00pm — 1 Comment

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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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