The Foundation for Children with Atypical HUS

Margie Siegel
  • Female
  • Chesterfield, MO
  • United States
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Margie Siegel's Friends

  • Cheryl Biermann
 

Margie Siegel's Page

Latest Activity

Margie Siegel left a comment for Cheryl Biermann
"Hi Cheryl!  No, I can't find you on FB.  Maybe you can find me!!!  Margie Chazen Siegel.  Hi to Mr. Nathan!!!"
Sep 19, 2011
Cheryl Biermann and Margie Siegel are now friends
Sep 19, 2011
Cheryl Biermann left a comment for Margie Siegel
"Hi Margie!   Welcome to our site, did you find me on facebook?  I'll look for you there too.  Margie thank you so much for all you have done/are doing for the renal kids, sometimes they are a little forgotten when it comes…"
Sep 19, 2011
Linda Burke left a comment for Margie Siegel
"Hi Margie! We adore our hospital volunteers - thanks so much for making patients and their families feel supported and more comfortable!"
Sep 18, 2011
Margie Siegel is now a member of The Foundation for Children with Atypical HUS
Sep 18, 2011

Profile Information

Birthday
June 3
Do you have a friend or family member diagnosed with aHUS?
No
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
I am a hospital volunteer in St. Louis.
My child ( or myself as a patient) is best described as:
Question Does Not Apply To My Situation

Comment Wall (2 comments)

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Join The Foundation for Children with Atypical HUS

At 9:36am on September 19, 2011, Cheryl Biermann said…

Hi Margie!

 

Welcome to our site, did you find me on facebook?  I'll look for you there too.  Margie thank you so much for all you have done/are doing for the renal kids, sometimes they are a little forgotten when it comes to their education, especially when they get to dialysis.  You and sister are a delightful teaching duo!

At 10:33pm on September 18, 2011, Linda Burke said…

Hi Margie!

We adore our hospital volunteers - thanks so much for making patients and their families feel supported and more comfortable!

 
 
 

WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

The Foundation for Children with Atypical HUS 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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.



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